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This is to certify that the

thesis entitled

Gender Differences Among Spouse Caregivers
of Persons with Dementia in Distress
Associated with Caregiving Tasks.

presented by
Kathy D. Reid

has been accepted towards fulﬁllment
of the requirements for

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GENDER DIFFERENCES AMONG SPOUSE CAREGIVERS
OF PERSONS WITH DEMENTIA 1N DISTRESS
ASSOCIATED wrm CAREGIVING TASKS
By

Kathy D. Reid

A Thesis

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

MASTER OF SCIENCE

College of Nursing
1996

ABSTRACT
GENDER DIFFERENCES AMONG SPOUSE
CAREGIVERS OF PERSONS WITH DEMENTIA IN DISTRESS
ASSOCIATED WITH CAREGIVING TASKS
By

Kathy D. Reid

The purpose of this study was to determine if husband and wife
caregivers experience differing levels of distress in relation to specific caregiving
tasks. A secondary analysis of data taken from the study "The Impact of
Alzheimer’s Disease on Family Caregivers” is used to answer the proposed study
question, (Clare Collins, Ph.D., Principal Investigator, Grant #2R01-MH-41766,
IRB 88-442). While the original study utilized a longitudinal survey design, only
spouse caregiver respondents interviewed during Wave II were selected for
inclusion in this study. Socio-demographic differences noted between the two
groups of caregivers were related to caregiver age and care recipient disability.
Statistical analysis revealed no signiﬁcant differences between husband and wife
caregivers in level of distress associated with speciﬁc tasks or groups of
caregiving tasks Multivariate analysis revealed time involvement with caregiving

tasks as a signiﬁcant inﬂuence on caregiver distress.

To Marshall, Derek and Ryan

ACKNOWLEDGMENTS

I would like to extend my appreciation to my thesis chair Clare Collins
for her support of my efforts throughout the thesis process. In addition, I would
like to acknowledge my appreciation for the time and efforts of the other
members of my committee - Sharon King and Manfred Stommel. Their review
of my drafts and invaluable recommendations increased the strength of my
project

Special thanks to my family for their love and support during the course

of my graduate study.

TABLE OF CONTENTS

LIST OF TABLES ......................................... vii
LIST OF FIGURES ........................................ viii
THE PROBLEM .......................................... 1
Background of the problem .............................. 1
Statement of the problem ............................... 4
REVIEW OF LITERATURE ................................. 5
Caregivin g Tasks ...................................... 5
Global and Speciﬁc Reactions to Caregiving .................. 7
Gender Differences in Response to Dementia Caregiving ........ 11
Summary ........................................... 15
Conceptual Model ..................................... 16
METHODS 20
Study Design ........................................ 20
Sample ............................................. 20
Data Collection Procedures .............................. 21
Protection of Human Subjects ............................ 22
Operational Deﬁnition of Variables/Instrumentation ............ 22
Extraneous Variables .................................. 26
RESULTS 26
Socio-demographic Characteristics ......................... 26
Gender and Distress with Speciﬁc Caregiving Tasks ............ 29
Differences in Overall Distress Among Men and Women ........ 35
Analysis of Effects of Extraneous Variables .................. 36
DISCUSSION ............................................ 37
Methodological Limitations .............................. 37
Interpretation of Findings ............................... 39
Implications for Advanced Nursing Practice and Primary Care ..... 43
Recommendations for Future Research ..................... 45

APPENDICES

Appendix A: Caregiver Activities Scale ..................... 48
Appendix B: UCRIHS Approval .......................... 52
Appendix C: ADL Dependency Scale ...................... 53
Appendix D: Cognitive Functioning Scale ................... 57
LIST OF REFERENCES .................................... 60

LIST OF TABLES

Table 1- Demographic Variables for Spouse Caregiver Sample ......... 28
Table 2- Time spent with Caregiving Tasks:

Comparison of Husbands and Wives ....................... 32
Table 3- Caregiver Time spent with Caregiving Tasks - Total Sample ..... 33
Table 4- Distress Associated with Caregiving Tasks - Total Sample ...... 34
Table 5- t-tests of Independent Samples for Mean/Overall Distress ...... 35
Table 6-Unadjusted and Adjusted Means ......................... 37

LIST OF FIGURES

Figure 1- Factors inﬂuencing caregiver responses to the patient with AD . . 18

Figure 2- Adaptation of Caregiving Model from Figure l ............. 20

The Problem

W

The United States is experiencing considerable growth in its elderly
population (Rice et al., 1991). Current projections estimate that by the year
2010, more than 40 million Americans will be 65 years of age and older (US.
Dept. of Commerce, 1994). As the number of elderly increase, so will the
demands on the health care delivery system. In turn, health care providers will
need to enhance their knowledge of the needs of this diverse population
particularly with regard to medical and mental health concerns.

As the elderly population grows, the cognitive disorders commonly
referred to as dementia processes will be of interest to health practitioners
(Ofﬁce of Technology Assesunent, 1987). Dementias are among the most
common cognitive disorders found among the elderly (Reiﬂer, 1990), and have
grown into a major public health issue (OTA, 1987). Alzheimer’s Disease is the
most common type of dementia (comprising approximately 66% of all dementia
cases), and is the fourth leading cause of death among the over 65 age group in
the United States (OTA, 1987). Persons with dementia such as Alzheimer’s
Disease become increasingly unable to ﬁll social roles and ultimately become

dependent on others for assistance with activities of daily living (Pallett, 1990).

2
Family members, particularly spouses, are the primary caregivers for patients

with Alzheimer’s Disease in this society (Wilhoite & Buschmann, 1991). Spouse
caregivers often face an overwhehning task and, although not all will suffer
adverse outcomes from the caregiving experience, they are at risk for diminished
health and psychological well-being (Collins, Stommel, Given, & King, 1991;
Given, Collins, & Given, 1988).

There is a vast amount of literature available on experiences and
outcomes of caregiving. Within the literature, there has been growing interest in
the reactions of caregivers to caregiving experiences with some researchers
focusing speciﬁcally on spouse caregivers. The literature has explored
differences among husband and wife caregivers and looked at the inﬂuence of
gender differences among spouse caregivers in response to caregiving. In
addition, spouse caregiver reactions such as burden and distress associated with
the caregiving experience have been examined (Fitting, Rabins, Lucas, &
Eastham, 1986; Zarit, Todd, & Zarit, 1986; Pruchno & Resch, 1989).

Based upon the internal nature of the relationship, the expectations and
commitments of caregiver-recipient bonds differ (Pallet, 1990). The relationship
of the spouse caregiver-recipient is recognized as an intimate connection that
may inﬂuence outcomes of caregiving in ways that are different from other
caregiver-recipient bonds. Additionally, differences among male and female
spouse caregivers may inﬂuence their response to caregiving demands.
Differences, such as the way husbands and wives perceive their social
environments and social support network, perception of their relationship with

the care-recipient, and amounts of time carrying out caregiving activities, have

3
been explored for their impact on the caregiving role (Fitting, et al., 1986;

Enright, 1991). The literature also explores such concepts as gender and the
effect gender differences may have on response to caregiving among husband
and wife caregivers (Lutzky & Knight, 1994).

Gender differences have been recognized as major contributors to the
way in which the caregiver responds to the caregiving experience (Young &
Kahana, 1989). Research has also contributed information regarding differing
types of caregiving activities performed by husband and wife caregivers (Stone,
Cafferata, & Sang], 1987) and use of outside support resources (Pruchno &
Resch, 1989).

There are reports of caregiver reactions such as stress, distress, burden,
and coping (Given, et al., 1988; Neundorfer, 1991; Gallagher-Thompson, Brooks,
Bliwise, Leader, & Yesavage, 1992; Wilson, 1989). Such reactions are described
as general responses to caregiving and the terms are often used interchangeably
in the literature. These global reactions have been studied as they relate to
speciﬁc aspects of caregiving such as the impact of caregiving on interpersonal
relationships, social activity, and ﬁnances (Barusch & Spaid, 1989; Moritz, Kasl,
& Berkrnan, 1989; George & Gwyther, 1986) .

Researchers have attempted to discover which variables involved in
caregiving have a significant relationship to caregiving outcomes. For example,
researchers have evaluated the impact of assistance with different groups of
caregiver tasks and the inﬂuence of these caregiving activities on response to
caregiving. Factors involved in the stress process and how they relate to

consequences for a caregiver’s physical and emotional health are highly variable.

4
Although the types of problems requiring assistance from caregivers and the

caregiver’s reaction to those problems differ greatly, many researchers have
failed to account for these differences (Neundorfer, 1991).
Wm

Despite multiple studies on global reactions to caregiving, and response
to caregiving as inﬂuenced by assistance with deﬁned groups of caregiving tasks,
little is known about the reactions of the spouse caregiver to speciﬁc caregiving
tasks within these groups. little is known about differences among husband and
wife caregivers and the amount of distress they experience when providing help
to their spouse with speciﬁc caregiving tasks. It is important to understand the
impact of caregiving on the spouse in order to best inﬂuence positive outcomes
of care. Activities that are particularly stressful for the spouse caregiver may
negatively inﬂuence coping and, in turn, inﬂuence their ability to maintain
themselves in a primary caregiving role. Increasing the knowledge base in this
area will enhance the development of successful intervention strategies and will
foster a successful caregiving experience.

The spouse caregiver-recipient relationship and gender differences among
spouse caregivers may both inﬂuence how the caregiver participates in the
caregiving role and, in turn, how the caregiver reacts to the caregiving
experience. The purpose of this study is to determine if husband and wife
caregivers differ in the level of distress experienced when providing assistance
with speciﬁc caregiving tasks for a spouse with dementia. The hypothesis for

this study is that a differing level of distress will be experienced by husband and

wife caregivers in relation to speciﬁc caregiving tasks.

5
Review of Literature

W

The term dementia implies global impairment in mental function.
Symptoms may include memory loss, loss of language functions, impairment in
abstract thinking ability, personality change, apraxia leading to decreasing ability
to care for oneself, and emotional instability. Dementia patients may experience
spatial disorientation and motor disturbance, as well as anxiety, mood, and sleep
disorders. In addition, individuals with dementia encounter difﬁculties
performing daily activities such as dressing and cooking, planning, initiating, and
carrying out activities such as work and budget planning. They may use poor
judgment, lack insight, and be at risk for physical injury (DSM-IV, 1994; OTA,
1987).

Because of the manifestations resulting from dementia, individuals with
the disorder will, at some point, require assistance with daily living tasks.

During the later stages of the disease, patients may require various amounts of
help throughout the day and night with such activities as eating, grooming and
toileting (ADRDA, 1990).

The literature describes activities associated with the care of persons with
dementia as activities of daily living (ADL), instrumental activities of daily living
(IADL), and behavioral symptoms associated with the disease (Given, et al.,
1988; Moritz. Kasl, & Berkman, 1989; Vitaliano, Russo, Young, Teri, Maiuro,
1991; Zarit, Todd, & Zarit, 1986; Haley & Pardo, 1989). In addition, Rice et al.
(1991) add the category of aid provided by caregivers in social/recreational

activities.

6
Haley and Pardo (1989) described and measured three caregivingactivity

categories as a means for assessing patient impairment and caregiving coping
and adjustment. Activities of daily living measures were deﬁned as those tasks
requiring assistance due to an impairment in basic self-care behavior (e.g.
continence, transfers, bathing, and ability to feed oneself). Instrumental
activities of daily living were designated as those tasks requiring assistance due
to an impairment in higher level self-care skills (e.g. ability to use the telephone
and manage one’s ﬁnances). Behavior problems were deﬁned as those troubling
or disruptive changes in one’s personality or behavior requiring intervention on
the part of the caregiver.

For the purpose of this thesis, caregiving tasks will be deﬁned as the
categories outlined above; AQL (assistance with personal care, including
bathing, toileting, feeding, getting dressed; and assistance with mobility including
walking, and getting in and out of bed), 1A2], ( providing transportation;
managing ﬁnances; assistance with household tasks such as laundry, cooking, and
cleaning; assistance with tasks outside the home such as shopping and running
errands), and W ( confusion and memory loss, and providing
emotional support). Since caregivers may ﬁnd themselves frequently involved in
the social/recreational needs of the dementia patient, the category of W
my (including the structuring/planning of activities such as recreation, meals,
and rest, and coordinating, arranging, and managing services and resources) is
integral to discussion within this paper and described here as an additional set of
caregiving tasks often facing the dementia caregiver. In addition, it is important

to recognize caregiving activities associated with the health care needs of

7
persons with dementia, hence the category We; (medical or

nursing treatments such as giving medications, changing dressings, skin care,
exercises, etc; and monitoring and reporting symptoms and progress) is included

here as another category of caregiving activity worthy of discussion.

 

There is a large volume of literature that examines caregiver reaction to
the caregiving role. The literature describes these reactions by the use of such
terms as subjective burden, stress and the mental health outcomes of caregiving
like depression and anxiety. Given, et al., 1988, conceptualized caregiver
reactions as “psychological responses” (p. 77) that inﬂuence the nature of
caregiving relationships and impact the physical and emotional health of the
caregiver. Interests have focused on the effects of the overall caregiving
experience and on which aspects of such experiences inﬂuence caregiving
outcomes.

Although the caregiver’s response to caregiving has received considerable
attention in the literature, some confusion remains about the way in which the
short and long term nature of these reactions are deﬁned. Caregiver burden is
most often discussed as speciﬁc to the caregiving role. Caregiver burden has
' been measured by a number of researchers who attempt to describe caregiver
reaction in relation to activities of caregiving. Poulshock and Deimling (1984)
describe burden as it refers to the subjective experience that certain caregiving
tasks are considered stressful or burdensome.

Grafstrom, Fratiglioni, Sandman, and Winblad (1992) discuss burden

interchangeably with the term "psychologin stress" (p. 868) as a means for

8

describing caregiver reaction to living with a family member who has a
dementing disease. Burden has been used to describe mental health outcomes
of caregiving and caregiver burden has been associated with increased stress
symptomatology, poorer self rated health, affect balance and life satisfaction
among caregivers (George & Gwyther, 1986). Most generally, burden is seen as
a short term outcome of the caregiving experience and, when allowed to persist,
may lead to more global long term effects such as depression and anxiety.

Depressive symptomatology has been associated with caregiver tasks and
patient cognitive function (Moritz, et al., 1989). Caregiver stress related to a
cognitively impaired person’s memory and behavior problems has been found to
be predictive of caregiver depression and anxiety (Neundorpher, 1991).
Neundorpher (1991) discussed the perceived stressfulness of patient problems
and coping efforts as a means for evaluating the caregiver’s physical health, and
depression and anxiety associated with caregiving. Others have described
caregiver reactions by comparing stress symptoms of the family caregiver with
those not caring for family members with dementing disease. George and
Gwyther (1986) found the dementia caregivers in their study had three times as
many stress symptoms as their community counterparts not caring for cognitively
impaired individuals.

According to Webster’s Third World Dictionary (1976) distress
"commonly implies conditions or circumstances that cause physical stress or
strain, suggesting the need for assistance; in application to mental state, it

implies the strain of fear, anxiety, shame or the like (p.660)". A nail body of

9

caregiving research uses the term "distress” as a means for describing reaction to
the caregiving experience.

Distress has been used as a collective term for discussing the reaction to
anxiety or depression associated with caregiving (Novack, Bergquist, Bennett, &
Gouvier, 1991), and has been used synonymously with caregiver burden by
others ('l‘ausig, 1992). Vitaliano, et a1. (1991) discuss the concept of distress and
use burden as an interchangeable term in deﬁning its meaning. The authors
suggest that distress (burden) is the end product of the interaction between
exposure to stress, vulnerability, and resources. Knight, Lutzky, Macofsky-Urban
(1993) deﬁne caregiver distress broadly to include ”subjective burden,
depression, anxiety, hostility, and other measures of negative affect” (p. 240).

Despite the fact that several researchers have described long term
outcomes of caregiving such as depression as a manifestation of the caregiver
role, others question whether outcomes such as depression might be associated
with other variables outside of the caregiving experience. For example, although
women tend to report increased levels of distress or burden with caregiving, they
also report increased levels of depression in the non-caregiving population as
well (Krause, 1986). Hence, it may be suggested that it is a predisposed
tendency toward depression in women that leads them to react differently than
men to the same caregiving events.

In summary, considerable variability exists in the literature among terms
describing caregiver reactions. For the purpose of this study, caregiver distress
is deﬁned as a reaction to performing speciﬁc caregiving tasks. Such distress

may lead to subjective feelings of burden which can be translated to more global

10
long term outcomes such as depression and anxiety disorders. Because distress

may lead to long term negative effects of caregiving, it is important to
understand the spouse caregiver’s subjective feelings of distress associated with
the caregiving role, particularly when the distress experienced by assisting the
spouse with dementia is associated with speciﬁc caregiving tasks.

There is a mall body of literature that examines the distress experienced
by dementia caregivers in response to speciﬁc caregiving tasks. Vitaliano, et a1.
(1991) used a longitudinal approach to evaluate the importance of care recipient
and caregiver variables in anticipating distress among spouse caregivers. The
authors found that baseline caregiver burden interacted with care recipient
ADI.s and that caregiver vulnerability interacted with available resources.
Subsequently caregivers already burdened with more impaired care recipients
were at greater risk for distress (burden). In a study of 140 dementia caregivers,
Farran, Keane-Hagerty, Tatarowicz, and Scorza (1993), found that fewer
caregivers reported distress associated with ADL and IADL tasks than activities
associated with disruptive behaviors. Mean levels of distress reported in each of
these categories was found to be low, with moderate levels of distress being
reported for assistance with disruptive behaviors only. Findings indicated no
signiﬁcant relationships between level of care-recipient ADL impairment and
caregiver burden. Despite the efforts of some to examine distress associated
with general aspects of caregiving activity, no studies could be found that

measured the distress associated with speciﬁc caregiving tasks.

 

While a signiﬁcant amount of literature describes the general caregiver
characteristics of the male and female caregiver of dementia patients and
differences that exist among them, a smaller body of literature examines the
differences between spouse caregivers. Although society’s image of caregiving is
as a largely female endeavor, with 67% of care provided by wives in spouse-
caregiver relationships (Miller & Cafasso, 1992), it has been supported in the
literature that husbands participate extensively in caregiving for their wives with
dementing illness (Enright, 1991).

Research based on gender differences among caregiving spouses of
patients with dementia addresses such topics as time spent providing care to a
spouse with dementing illness, types of activities performed by husband and wife
caregivers, help received from outside support sources, and mental health
differences among male and female caregiving spouses. Enright (1991) found
that while husbands and wives participate extensively in caregiving, they differ in
the amount of help they receive with caregiving tasks. Non-employed wives in
the study were found to receive less help from others with daily caregiving
activities. Spouses with jobs, particularly husbands, received large amounts of
outside help. likewise Pruchno and Resch (1989) found caregiving husbands
more likely than wives to be receiving help with direct physical care.

Pruchno and Resch (1989) suggest that the demands of the caregiver role
are experienced differently by men and woman. In comparing the mental health
outcomes of husband and wife caregivers, wives were found to be more

depressed and experienced more burden than caregiving husbands. In contrast,

12
Fitting, Rabins, Lucus, and Eastham (1986), report that while the woman in

their study reported more depressive symptoms, husbands and wives experience
similar degrees of burden, and appeared to experience their caregiver roles in
similar ways overall.

While little was found in the dementia caregiving literature to describe
tasks speciﬁc to the male and female caregiver, researchers in other areas of
caregiving have found that men and women provide differing types of care. The
following studies are mentioned here as a means for describing the types of
caregiving activities in which each gender might engage. It is noted, however,
that because of the cognitive changes associated with dementing illness,
dementia caregiving situations may include additional task domains not
discussed here, such as those tasks related to the behavioral management needs
of dementia patients.

In a study of nonspouse caregivers, Stoller (1990), found that helping
patterns among caregivers reﬂected the cultural division of labor based on sex.
Woman were more likely to help with cooking, laundry, and routine household
chores. Men were as likely as women to assist with shopping, ﬁnancial
management, and heavy chores. In general, women provided assistance with a
broader range of tasks. Findings suggest that men were less frequently likely to
assist with routine household chores, and more apt to be available for
intermittent or occasional tasks. In a study of 183 heart patient caregiver dyads,
ﬁndings were consistent in showing that female and male caregivers were likely
to help with gender-speciﬁc tasks. Women were found to provide more

assistance in general, assisting with tasks such as laundry and meal preparation;

13

males were more likely to assist with transportation and handiwork (Young &
Kahana, 1989).

Barusch and Spaid (1989) report that male' spouse caregivers are more
likely to make use of home nursing, aide, and home delivered meal services.
Men reported performing more tasks than woman, particularly in the areas of
communication, mobility, hygiene, dressing and feeding. Again, women were
found to report higher levels of burden than men. Similarly, Stone et al.,
(1987), found husbands to report that they spent the greatest number of extra
hours with caregiving responsibility. Eighty-nine percent of husbands reported
spending extra time on shopping and transportation, while 58% of wives
reported spending extra time helping with money matters as compared to 42%
of caregiving husbands.

Although several researchers suggest that gender differences may
inﬂuence the caregiver’s response to the caregiving experience, some controversy
persists as to whether reported gender differences actually exist and, if so, the
level of signiﬁcance of such reports to clinical practice is questioned. Miller and
Cafasso (1992), examined and compared a variety of caregiving literature with
respect to gender differences. These authors maintain that published articles
tend to emphasize statistically signiﬁcant gender differences, while ignoring
ﬁndings suggestive of the presence of no differences, in turn minimizing the
clinical signiﬁcance of study results. Through the use of meta-analysis
techniques, these authors examined the combined ﬁndings from descriptive
. studies of gender differences in caregiving. Accumulated results across studies

and an evaluation of the size and signiﬁcance of gender differences in caregiver

14

stress and burden were examined. The authors found no signiﬁcant gender
differences in functional impairment of the frail care recipient or total caregiver
involvement in care. Woman were found more likely to carry out personal care
and household tasks and were more likely to report greater burden. However,
neither ﬁndings were signiﬁcant enough to represent any real differences. A
limitation of caregiver research is the inability to detect the relatively mall
differences between male and female caregiver activity. The authors attribute
problems with interpretation of ﬁndings to conceptual and methodological
limitations of caregiver studies to date.

Despite the focus in the literature on gender differences in caregiving,
several questions remain that, when answered, may shed light on caregiver-
recipient reaction to the caregiving experience. It may be helpful to understand
to what extent the male and female differ in their enactment of the caregiver
role (Miller & Cafasso, 1992), and to test for differences between the male and
female spouse provider in reaction to speciﬁc caregiving activities. The
literature is lacking in clinically based studies that describe the caregiving
experience and in testing hypotheses that suggest caregivers use gender-related
approaches to their role. The literature offers few guidelines for designing
intervention programs sensitive to gender differences (Corcoran, 1992). In
addition, no studies were found that addressed speciﬁc caregiver tasks and the
relationship of these tasks to a gender based response to providing care.

While some literature demonstrates differences in types of tasks
performed by the spouse caregiver based on gender and groups of tasks, less is

known about differences between husband and wife caregivers in reaction to

15
speciﬁc tasks within the groups. little progress has been made to explain why

these general responses exist for both the husband and wife provider and,
whether or not, gender plays a signiﬁcant role in differing response. Some
speculate differences that do exist may be due to gender speciﬁc role
expectations. This assumption may lead to biased interpretation of study
ﬁndings and limit implications to clinical practice situations. Because some
study results contradict traditional thought on gender speciﬁc tasks, and make it
unclear as to what gender speciﬁc caregiving tasks exist among spouse
caregivers, this author proposes the need for further investigation in this area.
52mm

As dementia impairs a person’s ability to function independently, she or
he will need assistance to maintain daily activities. Such activities may include
daily living tasks, management of behavioral symptoms associated with the
disease, and the social implications manifesting in the process. Family members,
particularly spouses, are often the primary informal providers of care for
dementia patients. Because spouses of dementia victims are often elderly and
frail themselves, they are at risk for potential health outcomes produced by the
physical and emotional stress and strain brought about by the caregiving
experience. Spouse caregiver reaction to the manifestations of caregiving may
lead to affect imbalance and inﬂuence their overall sense of well being. Gender
differences among husband and wife caregivers are likely to inﬂuence the
response to caregiving. While the literature addresses the response of the
caregiver to various general caregiving responsibilities it fails to describe these

activates in more speciﬁc terms. Little is known about the spouse caregiver’s

16
response to speciﬁc caregiving tasks or about gender differences among spouse

caregivers and the distress produced by performing these speciﬁc activities.

Clinical nurse specialists (CNS) working with the geriatric population are
in a key position to assist the older spouse to cope with the distress produced by
dementia caregiving. Assistance with speciﬁc caregiving tasks may promote a
more positive response to the caregiving experience. The CNS can enhance the
understanding of role stress and strain and, in turn, promote positive self care
behaviors on the part of caregivers. In collaboration with other members of the
health care team, the CNS can share accountability for planning for the needs of
dementia caregivers and care recipients within their community, or within health
care systems in general. In so doing, the CNS acts as a change agent by
systematically bringing about positive alterations in health care systems and in
the communities which they serve. By identifying the health needs of caregivers
and implementing a therapeutic plan of treatment, the CNS is able to coordinate
the structure of the caregiving situation and evaluate caregiver effectiveness.
And by assuming the role of educator, the nurse in advanced practice can teach
both caregivers and health care providers how to effectively manage the
demands of the caregiving role, and enhance a positive response to caregiving.
We!

Sources of stress experienced by family caregivers of patients with
dementia are variable and may positively or negatively inﬂuence the caregiver’s
response to caregiving. As a means for understanding the stress and strain of
caregiving, Given, Collins, and Given (1988) developed a model that describes

factors inﬂuencing caregiver response to caregiving. Although this model has

17
not been tested in the literature, it offers a clear picture of the complex

interrelationships among variables that inﬂuence caregiver response and is useful
as a means for understanding the concepts introduced with this research. The
model will be used to guide the discussion of caregiver distress as experienced
by spouse caregivers in relation to speciﬁc caregiving tasks, and as a means for
understanding the inﬂuence of gender on caregiver reaction to providing care to
individuals with dementia.

The model depicts the complexity of the relationships among variables
which have a bearing on the caregivers reaction to the overall caregiving
experience (Fig. 1). The authors suggest that factors such as the M
MW and MW
M119; inﬂuence the W and determine the initiation
and maintenance of the caregiving role.

W such as severity of disease with resulting symptoms
and deﬁcits such as cognitive dysfunction, disruptive behavior, imwired social
functioning, and need for assistance with daily activities interact with We;
M such as caregiver gender, personality traits, and deﬁned role
obligations. As these caregiver and patient characteristics interact, they
ultimately impact the caregiving relationship.

The m z. [9. '-i..5 . ."t l'. ..° ' - 'AtiH'J, p: 5',“ ..
relates to such elements as kinship and how the caregiver and care receiver
maintained and valued their previous interaction. The W is
integral to the overall quality and direction of the caregiving relationship. It is

most inﬂuenced by the social support the caregiver perceives as available,

18

community services used, and the ﬁnancial conditions imposed by caregiving.
Caregiver interpretation of the caregiving environment will be based on the
caregiver’s perception of the quality and availability of support services.

The way caregiver/patient characteristics and prior relationship issues
support the caregiving environment will inﬂuence the caregiver’s response to
caregiving. These reactions, in turn, impact caregiver physical and mental
health. The model depicts a constant interplay between these reactions and the
maintenance of the caregiving role. Caregiver physical and mental health have
the capacity to impact the caregiving role as a continuous interaction with the

caregiver’s response to caregiving.

 

[ PatientCharacteristics J

 

 

Impact on caregiver
physical and
mental health

 

 

 

 

 

 

 

 

 

Type and quality of ' .
prior relationship {Caregiver reactions
between family

L PB“ J r Caregiver Characteristics I

 

Figure 1 - Factors inﬂuencing caregiver responses to the patient with AD
(Given, Collins, & Given, 1988)

Caregiver reactions are conceptualized by the authors as ”psychological
responses" to the caregiving role. These reactions will determine the ongoing
nature of the caregiving experience as they interact with the caregiving

environment and the health of the caregiver. Caregiver reactions have been

19
classiﬁed as negative and positive reactions, impact on schedule and health,

feelings of family abandonment, and role responsibility.

The purpose of this thesis is to examine distress associated with speciﬁc
caregiving activities, and to determine if male and female caregivers differ in the
level of distress experienced with speciﬁc caregiving tasks. The caregiving model
described above has been adapted as a means to explain the interaction among
variables that may inﬂuence the level of distress experienced by the caregiver
and associated with the caregiver role (ﬁg. 2). The adopted model considers the
indirect link between caregiver characteristics and caregiver reactions through
the initiation and maintenance of the caregiving role. This link is integral to
understanding the relationship between caregiver characteristics and caregiver
reactions. The need for help with speciﬁc caregiving tasks is recognized as a
patient characteristic and gender is recognized as a caregiver characteristic that,
through a complex interaction, will have an impact on the way in which the
caregiver responds to a particular caregiving situation. Caregiver reactions to
the need to help the person with dementia with various needs may be manifest
in the form of distress. Distress will be recognized as a negative reaction that
inﬂuences the physical and mental health of the caregiver. This subjective
emotional response is in constant interaction with the caregiving environment
and is seen as integral to the maintenance of the caregiving role. It is
recognized that gender may inﬂuence the way in which the caregiver interprets
the demands of his or her role, particularly in relation to the speciﬁc type of

activity in which the caregiver may engage. Caregiver perception of the

20
caregiving experience will be inﬂuential in determining an overall reaction and

will, in turn, play a decisive role in the maintenance of caregiver health.

 

Distress
ssociated with
> Caregiving Tasks

 

hi

 

Figure 2- (Adaptation of Caregiving Model from Fig.1, Given, Collins, &
Given, 1988).

Methods

Data used to answer the proposed research question was taken from the
study "The Impact of Alzheimer’s Disease on Family Caregivers". This study
was funded by the National Institute of Mental Health and took place between
1988 and 1992.
W

The original study "The Impact of Alzheimer’s Disease on Family
Caregivers" utilized a longitudinal survey design with three measurement points
across a four year study period. The intent of the original study was to measure
changes in caregiver reactions, mental and physical health, changes in patient
characteristics, community service use, service availability, caregiver reactions to
patient institutionalization, and bereavement reactions of caregivers over time.
For the purpose of this thesis, a secondary analysis of data collected from this
larger study will be carried out in order to answer the proposed study question.
Sample

A convenience sample of 210 caregivers providing care to family members
with dementia in the community setting were recruited during Wave II of the

original study. This sample is used for the purpose of data analysis carried out

21

as part of the research described in this thesis. Subjects were recruited via
mailings to potential participants located through the Alzheimer’s association
and various health agencies in south west Michigan. These agencies distributed
a description of the study along with a postcard to the potential participants.
The postcard was to be returned to the principal investigator indicating the
interest of the respondent to participate in the study. The caregivers who
indicated interest in study participation were then screened over the telephone
by trained interviewers to determine study eligibility. Subjects meeting the
following criteria were included in the study: 1) the caregiver had to identify
himself as the family member who provided the most care to a relative with
Alzheimer’s disease or a related dementia; 2) the relative with dementia was at
least 55 years old; and 3) dependent in at least one activity of daily living (ADL)
and one instrumental activity of daily living (IADL); 4) the family member had
received a diagnosis of Alzheimer’s disease or related dementia (as reported by
the caregiver; no other conﬁrmation of diagnosis was made); 5) the patient and
caregiver were residing in the community at the time of entry into the study.
For the purpose of this study, a smaller sample consisting of only the spouse
caregivers (n= 118) were selected out of the larger sample for inclusion in data
analysis.
MW

Prior to data collection, members of the sample were told that they would
be participating in a longitudinal study that involved contact by investigators at
three different points in time, over the four year study period. Individuals

involved in this study were asked to participate in a one and one-half hour

22
telephone interview and to complete a mailed, self-administered booklet at each

of the three measurement points. Data collection activities were carried out in
conjunction with the Center for Survey Research at Michigan State University
(Collins, 1993). The Human Subjects procedures were approved by the
University Committee on Research Involving Human Subjects at Michigan State
University.
WW

Members of the sample were informed of the conﬁdentiality of the
information gathered in this study. Each participant signed a written informed
consent prior to their participation in the study. The original study was
approved by the University Committee on Research Involving Human Subjects
at Michigan State University. Approval for secondary analysis of data collected
during the original study was obtained from the University Committee on
Research Involving Human Subjects (UCRIHS-see Appendix B). No subject

identiﬁers were included with the secondary data.

 

For the purpose of this study, caregiving tasks are operationalized as
described in the twelve questions that make up the "Caregiver Activity" self-
administered questionnaire. The Caregiver Activity Scale (Collins, 1993), will be
used as a means for examining time spent on the part of spouse caregivers
performing various activities and as a means for measuring caregiver distress
associated with these activities (See Appendix A). This scale is an adaptation of
the Caregiver Load Scale (CLS) developed initially as a means for measuring
time and energy family members expend in caregiving activities (Oberst,

23
Thomas, Gass, & Ward, 1989). The Caregiver Load Scale consisted of 10

frequently reported caregiver tasks including medical/nursing treatments,
personal care, assistance with mobility, emotional support, monitoring and
reporting, provision of transportation, managing illness-related ﬁnances,
additional household tasks, structuring activities, and managing behavior
problems. Initial content validity of the scale was assessed using a panel of
seven caregivers engaged in caring for a family member with Alzheimer’s
disease, and a panel of six clinical experts who made suggestions for revision of
the scale to ensure that items reﬂected the intended appraisal as accurately as
possible. Respondents were asked to respond to each item contained in the
questionnaire using a single ﬁve-point scale with response choices ranging from
images! of time and energy to 1113123139 time and energy. The CLS was
further modiﬁed as a means for measuring time spent in caregiving (demand),
and amount of difﬁculty associated with each of 14 frequently reported
caregiving tasks (Carey, Oberst, McCubbin, & Hughes, 1991). This Caregiving
Burden Scale (CBS) asked for subjects to respond twice to items on ﬁve-point
scales as ranging from 1311mm to mules] of time spent in providing a
particular activity (demand scale) and m to M of difﬁcultly
associated with the speciﬁc activity. A burden score was calculated (for each
item by multiplying demand by difﬁculty. Caregiving activities added from the
original CLS to the CBS included running extra errands,
coordinating/scheduling, assisting with communication, and increasing care for
others. For information on the CLS as discussed above relative to reliability of

the previously tested demand scale, and for validation of caregiving activities

24
refer to Oberst, et al., 1989. The difﬁculty scale and burden score had not been

previously tested.

The CBS has been slightly modiﬁed for the purpose of this study (see
Appendix A). Caregivers responding to the Caregiver Activities Scale were
asked to respond twice to a single ﬁve-point scale ranging from W
(=1) to M (=5) of time spent performing each of twelve caregiving
activities (time) and W (=1) to magical (=5) of distress
experienced performing each speciﬁc activity. The frequency scores related to
the category Mm (=1) for both distress and time associated with each
caregiving task is ambiguous. It is impossible to unambiguously sort out those
caregivers who experienced no distress or who did not participate at all in a
particular task from those who did. Therefore, all ﬁve possible response
categories for both distress( ranging from 3.1121321 (=5) to W
(=1)) and time spent with each task (ranging from M (=5) to Inﬂux
mg (=1)) are included in the data analysis.

For the purpose of this study, distress is operationalized as the subjective
response by study participants to questions on the "Caregiver Activity" self-
administered questionnaire. In addition, time is operationalized as ordinal level
estimates of the amount of time the caregiver spends performing each speciﬁc
caregiving activity.

Caregiving activities requiring response include medical or nursing
treatments; personal care; assistance with walking, getting in and out of bed,

. etc.; emotional support; monitoring and reporting symptoms and progress;

providing transportation; managing ﬁnances, bills, and insurance forms related to

25
the illness; additional household tasks; additional tasks outside the home;

structuring/planning activities; managing behavior problems; and coordinating,
arranging, and managing services and resources. Currently there is no reliability
or validity information available on this version of the scale. Validity of the
instrument is supported by its consistency with the literature by including
common accepted caregiving activities and as described in previous versions of
the scale. In addition, input from clinical experts and caregivers in the
construction of the original instrument helps to ensure the ability of the scale to
measure what it is intended to measure. Gender is operationalized by
categorizing sample participants by sex (male and female).

For the purpose of this research, two new scales were created using
existing study variables. The ﬁrst scale is ameasure of ADL dependency that
included eight personal care or mobility activities for which the caregiver rated
the care-recipient in terms of whether or not he or she could perform them
independently, with supervision only, or with some or total physical help. The
activities include getting dressed, grooming, bathing, toileting, eating, as well as
walking, transferring or getting in and out the house ( see Appendix C). A
Cronbach’s alpha of .94 reveals the very high internal consistency of this
measure. The second scale is a measure of cognitive impairment in which the
caregiver was asked to judge the care-recipient on seven different abilities
including orientation, judgment, memory, wandering, awareness of own needs,
night needs, and general supervision (see Appendix D). Responses to these

items again revealed substantial internal consistency (Cronbach’s alpha=.84)

suggesting that the scale is a reliable measure of patients’ cognitive disability.

26
mm

It is recognized that a variety of extraneous variables may effect the level
of distress experienced by caregivers. While the inﬂuence of gender on
caregiver distress associated with caregiving tasks may be evident through
various statistical analyses, it is important to consider other variables that may
also affect the reaction to the caregiving experience. For example, the
caregiver’s level of involvement with regard to the type and amount of time
spent with each task may inﬂuence the amount of distress he or she experiences.
In addition, it is important to consider the level of disability of the care-
recipient, including the level of cognitive impairment and the length of time the
caregiver has participated in caregiving, as these variables may be equally as
predictive of caregiver reaction as gender itself. Such background caregiver
characteristics such as age, educational level, and socioeconomic status are also
worthy of study because they may, in turn, have an impact on the caregiving
situation as well. As part of the statistical analysis of this study, the
characteristics of the combined group of caregivers, as well as the male and
female groups were described and examined.

Results
We

Table 1 presents demographic characteristics of the combined caregiver
sample, as well as the female and male groups of caregivers separately. The
combined group of spouse caregivers who make up the study sample are
predominantly white (96%), female (68%), and all reside with the care recipient

in the same household. The majority of the sample (84%) consists of the

27

caregiver-care recipient dyad without other persons residing in the same
household. Eighty-two percent of the combined sample has a high school, or
higher education, with a mean yearly family income of $27,909.48. The average
length of time involved in the caregiving situation is 5.6 years. The average age
of the caregiver is 68 years, while the average age of the care recipient is 71
years.

The two groups of husband and wife caregivers were compared using all
available soda-demographic variables (see Table 1). As the signiﬁcance values
indicate, (p< .05 are generally deemed statistically signiﬁcant), differences were
found with respect to caregiver age. Female spouse caregivers are, on average,
four years younger than male spouse caregivers. Care recipients of the male
spouse caregiver demonstrated a higher level of cognitive impairment and a
higher number of ADL dependencies. In addition, the variable number of
persons living in the household was nearly statistically signiﬁcant (p=.055) and
warrants mentioning here while comparing the two groups of spouse caregivers.
It is noted that 11% of female spouse caregivers lived in households consisting
of 4 persons; none of the male spouse caregivers had households of this size.
Male households were generally mailer, consisting of 2 to 3 persons. It is not
clear from data analysis who made up the households that consisted of greater
than 2 persons beyond the spouse couple. No other measured background

characteristic shows a signiﬁcant difference between the two comparison groups.

28

Table 1 - Demographic Variables for Spouse Caregiver Sample

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Caregiver Combined Group Female Male Sig. Test for
Characteristics (n=118) Caught": Caregivers Difference
(t or (Ii-square)
Gender 118 (100%) 80 (100%) 38 (100%)
' Caregiver Age(yrs)
Mean 67.60 66.08 70.78 p=.004
SD 8.36 8.44 7.31
Caregiver
Recipient Age (yrs)
Mean 70.54 70.91 69.76 p=.444
SD 7.58 7.41 7.95
Race
' White 113 (96%) 76 (95%) 37 (97%) p=.551
Non-White . 5 ( 4%) 4 ( 5%) o
118 (100%) 80 (100%) 38 (100%)
I living
Arrangements
Lives with 118 (100%) 80 (100%) 38 (100%)
Does not live with Q( 0%) 0( 0%) 0% NA
118 (100%) 80 (100%) 38 (100%)
Number persons
living in household
i 2 99 (84%) 66 (83%) 33 (87%)
3 10 ( 8%) 5 (6%) 5 (13%) p=.055
4 9 (8%) 9 (11%) 0 (020)
118 (100%) 80 (100%) 38 (100%)
‘ Household Income
Mean 27,909 26,215 31,527 p=.146
SD 15,685 13,025 19,969
Education
Less than HIS 21 (18%) 14 (18%) 7 (18%)
HS or higher W 31 (8220) p=.48
118 (100%) 80 (100%) 38 (100%)
Duration of care-
. giving (months)
Mean 67.22 67.11 67.43 p=.975
SD 51.02 55.46 40.58
Care Recipient
Disability
Cognitive Disability
Mean 2.84 2.750 3.040 p=.027
SD .67 .681 .607
ADL Dependency
Mean 2.45 2.28 2.80 p=.010
SD 1.05 7 1.02 1.04

29
with tile as

The purpose of this study was to determine if husband and wife
caregivers differ in the level of distress experienced when performing speciﬁc
caregiving tasks. First, a discussion of the spouse caregiver’s evaluation of the
time spent with caregiving tasks is presented. Table 2 portrays the time spent
with speciﬁc caregiving tasks by husband (N=38) and wife (N=80) caregivers.
Table 3 describes the sample means of the total group of caregivers (N=118) in
reference to each speciﬁc caregiving task. Table 4 summarizes mean levels of
distress experienced by husbands and wives related to each speciﬁc type of
caregiver task (see Appendix A for a list of the 12 caregiving tasks). Differences
among the two groups of caregivers are discussed.

As summarized in Table 2, (response categories are combined for the
purpose of reporting above data. Sm. amt. = Little/none + sm. amt, Mod. amt.
= mod. amt, Large amt. = Quite a bit + a Great Deal) variables associated
with time and caregiving tasks are relatively evenly distributed across tasks and
time associated with caregiving tasks. Caregivers were engaged most frequently
with activities associated with IADL, particularly household tasks where a
greater percent of husbands indicated they spent a large amount of time with
this activity as compared to wives. Caregivers also indicated they spent large
amounts of time with running errands (wives =52%, husbands =53%), and
assisting with ﬁnances, where a greater percentage of wives than husbands
indicated they spent a large amount of time with this task. Nearly the same
percentage of husbands and wives (42% and 46% respectively) indicated they

spent a large amount of time assisting with personal care activities. In contrast,

30

caregivers were engaged the least amount of time with activities associated with
health care tasks. A greater percentage of husbands as opposed to wives
indicated they spent a small amount of time on medical/nursing treatments.
Also of note, a large percentage of husbands and wives (59% and 77%
respectively) indicated they spent mall amounts of time assisting their spouse
with walking.

As summarized in Table 3, mean time scores for husbands were higher
for personal care assistance, assisting with walking, health care tasks, and
coordinating resources. This data may be supported by data that indicates male
spouse caregivers were caring for more cognitively impaired and ADL
dependent care recipients. Mean time scores were higher for women with
regard to assisting with transportation. Even though husbands had more
impaired care recipients, wives report higher time scores related to management
of behavior problems. Both men and women reported equal amounts of time
spent providing their spouse with emotional support.

No signiﬁcant differences were found among the mean time scores (time
spent on caregiving tasks) for each speciﬁc task between the two groups, except
for time spent assisting with transportation (p< .05). Wives rated the time spent
assisting with transportation higher in each response category compared with
husbands. While sample mean time scores were higher for men in assistance
with personal care, walking/getting out of bed, household tasks, medical/nursing
treatments, monitoring and reporting symptoms, planning activities, and
coordinating resources, differences between the two group means are not

statistically signiﬁcant. Likewise, sample mean time scores were higher for

31

woman with assistance with ﬁnances, running errands, and behavior problems,
differences between group means were not signiﬁcant. Mean time scores of
husband and wives for time spent providing emotional support to their spouse
with dementia were equal. Because it is not possible to sort out those caregivers
who did not spend at least a little amount of time on a particular caregiving
task, it cannot be concluded that all caregivers spend at least some amount of

time on any given task.

'32

Table 2 - Time Spent with Caregiving Tasks-Comparison of Husbands and Wives

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Small Moderate Large
Amount Amount Amount
ADL
Husbands 7 (19%) Husbands 15 (39%) Husbands 16 (42%)
Personal Care Wives 29 (36%) Wives 14 (18%) Wives 37 (46%)
Husbands 22 (59%) Husbands 10 (27%) Husbands 5 (14%)
Assist Walk Wives 61 (77%) Wives 7 (9%) Wives 12 (14%)
ME.
Husbands 19 (51%) Husbands 9 (24%) Husbands 9 (25%)
Transportation Wives 26 (33%) Wives 16 (20%) Wives 37 (47%)
Finances Husbands 14 (37%) Husbands 9 (23%) Husbands 15 (40%)
Wives 21 (26%) Wives 14 (18%) Wives 45 (56%)
HH Tasks Husbands 3 ( 8%) Husbands 10 (26%) Husbands 25 (66%)
Wives 16 (20%) Wives 18 (22%) Wives 46 (58%)
Errands Husbands 5 (13%) Husbands 13 (34%) Husbands 20 (53%)
Wives 10 (13%) Wives 28 (35%) Wives 42 (52%)
ﬂealth Care
Husbands 22 (58%) Husbands 9 (24%) Husbands 7 (18%)
Med/Nursing Wives 43 (54%) Wives 21 (26%) Wives 16 (20%)
Monitor S/S Husbands 21 (56%) Husbands 10 (26%) Husbands 7 (19%)
Wives 49 (62%) Wives 17 (22%) Wives 13 (16%)
ghavior Mgmt.
Husbands 9 (24%) Husbands 14 (37%) Husbands 15 (39%)
Emotional Support Wives 19 (25%) Wives 30 (38%) Wives 29 (37%)
Husbands 13 (34%) Husbands 12 (32%) Husbands 13 (34%)
Behavior Problems Wives 14 (18%) Wives 34 (43%) Wives 31 (40%)
my Recreation
Husbands 14 (37%) Husbands 7 (18%) Husbands 17 (45%)
Plan Activities Wives 25 (32%) Wives 31 (39%) Wives 24 (29%)
Husbands 16 (43%) Husbands 6 (16%) Husbands 16 (42%)
Coordinate Res. Wives 29 (37%) Wives 21 (27%) Wives 29 (37%)

 

 

33
Table 3 - Caregiver time spent with Caregiving Tasks-Total Sample

Total
Caregiver Task Sample N=118

(Mean)
ADL
Personal Care
Assist Walk

 

IADJ.
Transportation

Finances
HH Tasks
Errands

 

Wm
Med/Nursing
Monitor SIS

Wm
Emotional

Support
Behavior
Problems

5 . l B .
Plan Activities
Coordinate Res.

 

 

 

 

 

 

 

34

Table 4 - Distress Associated with Caregiver Tasks-Total Sample

Total
Caregiver Task Sample N=118

(Mean)
ADL

Personal Care
Assist Walk

 

IADL
Transportation
Finances
HH Tasks
Errands

 

E Health Care
Med/Nursing
Monitor SIS

 

Behavior Mgrnt.
Emotional
Support
Behavior
Problems

 

Social Recreation
Plan Activities
Coordinate Res.

 

 

 

 

 

35
Overall, individual analysis of each of the 12 caregiving tasks outlined in

the questionnaire reveals no signiﬁcant differences in distress scores among
husband and wife caregivers on any of the 12 tasks. Mean distress scores for
both the combined group and husband and wife groups show less than moderate
amounts of distress associated with each caregiving task with the exception of
assistance with behavior problems, which indicates that there are moderate

amounts of distress associated with this task for the combined group, as well as

wives separately.

 

Reliability analysis of distress scores demonstrated that distress in one
task area is highly correlated with distress in other task areas. A mean inter-
item correlation of .42 and a Cronbach’s alpha of .90 appear to indicate that
distress is a general psychological phenomenon that is not conﬁned to particular
tasks. Thus, the 12 distress scores were combined into a single score for further
analysis. As the data in Table 5 show, the mean distress scores combined across
all 12 tasks is 2.29. The associated SD is .83; skewness .69; minimum value 1.00;
maximum value 4.75. The t-test comparing the overall distress scores between
the male and female spouse caregivers demonstrates no signiﬁcant differences
between them, p>.05 (see Table 5).

Table 5 - t-tests of Independent Samples for Mean/Overall Distress

Variable Combined Husbands Wives 2-tail sig.
Distress 2.29 2.21 2.31 .53

 

36

We;
Because time spent on a particular caregiving task is a possible

confounding inﬂuence on distress, a correlational analysis was used to evaluate
the relationship between time spent with each task and distress. The analysis
revealed a strong relationship between distress with each task and time spent
with each task.

To amplify analysis, a reliability analysis was also performed on the time
variables to see if spouse time spent on caregiving activities varies consistently
across all 12 task domains. Again, a Cronbach’s alpha of .83 and a inter- item
correlation of .30 justiﬁes treating caregiver involvement as a single measure
indicating consistent variation in care involvement across all task domains with a
mean value of 3.03, SD .75; skewness= .198, minimum value: 1.00, maximum
value=4.92

As already established, the two groups of caregivers differ with respect to
age, patient ADL dependency, and cognitive disability. Therefore, the possible
inﬂuence of these variables on the dependent variable of distress was
considered. In addition, because of the strong relationship between time spent

caregiving and distress, time was considered to be a possible confounder as well.

Multivariate analysis (AN COVA) was used to control for these variables.
Results indicate that time spent on caregiving tasks had the greatest inﬂuence
on caregiver distress accounting for 29% of the variation in distress scores.
Other signiﬁcant factors inﬂuencing caregiver distress are the care recipient’s
cognitive limitations (accounting for 5% of the variation in distress scores) and

caregiver age (2.2% of variation in distress scores). No other variables appear

37
to inﬂuence spouse caregiver distress. In particular, as the data in Table 6 show,

caregiver gender does not affect spouse caregiver distress. Even after adjusting
for the effects of patient disabilities (cognitive and physical), caregiver age and
caregiver time involvement in care, no differences in male and female distress
scores were found. If anything, the adjusted means suggest a lower distress
score among male caregivers.

Table 6 - Unadjusted and Adjusted Means
(Adjusted for patient disability, caregiver age, and caregiver time spent in care)

Unadjusted Mean Adjusted Mean
2.22 2.13

 

 

2.32 2.37
.538 .094

 

 

 

 

In conclusion, no gender differences could be demonstrated among
husband and wife caregivers with regard to distress associated with speciﬁc tasks .
or overall distress associated with speciﬁc tasks. No signiﬁcant differences
among the two groups could be found regarding time spent with caregiver tasks
except with transportation. However, time involved with each task was
signiﬁcantly correlated with distress with each task and is more strongly related
to distress than gender itself.

Discussion
W!
The reader should exercise caution when attempting to generalize these
research ﬁndings to the clinical setting. The small sample size and lack of

random selection of study participants limits the usefulness of study results.

38
Homogeneity among sample subjects limits generalizability of ﬁndings to only
those with s-ilar characteristics and who meet similar inclusion criteria only. A
larger sample would have allowed for broader use of and interpretation of study
ﬁndings.

The version of the caregiver activity scale as adapted for this study had
not been previously tested in the literature. Currently, there is no published
reliability or validity information available on this version of the scale. Lack of
this information may limit interpretation of study ﬁndings.

The sample of caregivers who were used for inclusion in this study were
drawn from various community based agencies in south west Michigan. It is
possrhle that caregivers connected with these types of agencies may be receiving
support services that ease a general sense of burden, allowing caregivers to be
more tolerant of the demands associated with caregiving tasks. In turn, this may
inﬂuence distress scores among this group. Additionally, perhaps caregivers who
are connected with helping agencies may be more independent in help-seeking
behaviors, know where and how to access help, and, therefore, have better
coping skills and lower distress scores. This study did not measure pre-existing
coping skills or community based support services among this group of spouse
caregivers.

All possible response categories were included in data analysis for both
distress and time spent on caregiving tasks ranging from W (=1) to _a_
W (=5). There may be some respondents included who have no
involvement in particular tasks. This, in turn, may depress the distress scores

associated with these tasks. In addition, data representing those caregivers who

39
report no time spent with a particular activity may skew the mean scores

associated with each task, and inadequately represent study ﬁndings.

While gender did not prove to inﬂuence differences in distress levels
between husband and wife caregivers with respect to caregiving tasks in this
study, larger samples of a more heterogeneous population may demonstrate
different ﬁndings.

Wm

Findings from this study indicate no signiﬁcant differences between male
and female spouse caregivers with respect to distress associated with speciﬁc or
groups of caregiving tasks. Findings would appear to support the work of those
researchers who believe that gender differences among spouse caregivers are
generally not signiﬁcant or lacking all together. Miller and Cafasso (1992)
conclude that too much emphasis is placed on non-signiﬁcant ﬁndings and not
enough on ﬁndings that suggest the presence of no differences. It is noted,
however, that even though data from this study did not support gendered
differences among spouse caregivers with respect to distress associated with
caregiving tasks, one cannot rule out the possibility that gender differences may
be more obvious among other caregiver-care recipient dyads. For example,
adult child caregivers may ﬁnd certain tasks more distressful than others,
depending on the gender of the caregiver and the relationship they have to the
care recipient. Therefore, the inﬂuence of gender or caregiver reactions may be
confounded by the caregiver-care recipient relationship.

In light of the literature that says women are more distressed than men

regardless of their participation in carean situations, the women and men in

40
this sample had no differences between them with respect to distress and

associated caregiving tasks. It may be that women do not have increasing levels
of distress when engaged in caregiving, but maintain their general higher levels
of distress associated with previous roles. Additionally, men may indeed have an
increase in distress associated with caregiving, putting them on equal ground
with the women. If this is true, then one would conclude that men have more
distress caused by activities of caregiving than women.

It would appear that analysis of speciﬁc caregiving activities one by one
does not prove to generate different ﬁndings from analysis of caregiver task
domains. Therefore, the literature that discusses caregiver distress based on
groups of caregiving tasks appears to be supported by results of this study.

No signiﬁcant differences were found among the two groups of caregivers
with respect to time spent with each caregiving task or groups of tasks, with
exception of transportation where wife caregivers were found to spend more
time than husbands assisting the patient with this particular activity. This
ﬁnding is in conﬂict with literature by other researchers that report the male as
the primary provider of this type of caregiving activity (Young & Kahana, 1989;
Barusch & Spaid, 1989). Findings are in conﬂict with those who support the
notion that caregivers participate in gender speciﬁc tasks (Stoller, 1990). One
might assume that men would help more with this task particularly if the wife
does not drive or is unable to assist her husband who may be more physically
difﬁcult to manage based on his size. However, it is noted that the male
caregivers in this study sample had more dependent and cognitively impaired

spouses than female participants. Therefore, the male caregivers may have been

41
unable to transport their spouse outside of the home due to their spouse’s level

of illness. This type of situation would inﬂuence time spent by husbands on
transportation as a caregiving activity.

Mean distress scores related to individual caregiving activities were low to
moderate for the combined sample and for the individual groups of spouse
caregivers. Differences among the two groups of caregivers were not signiﬁcant.
Results indicate that participation in the caregiving activities included in this
study was no more than moderately distressful for this population of caregivers,
and that gender was not a signiﬁcant inﬂuence on distress experienced. Since
results support ﬁndings of other researchers who found similar distress levels in
relation to caregiving activities .(Farran et al., 1993), perhaps caregiving tasks do
not necessarily produce signiﬁcantly high distress levels. One cannot rule out,
however, that other aspects of caregiving may produce high levels of distress
among spouse caregivers. Mean time scores indicate spouse caregivers spending
only mall to moderate amounts of time on caregiving activities. Again, no
signiﬁcant differences were found between husband and wife caregivers with
respect to time spent on caregiving tasks. This ﬁnding is in conﬂict with some
research that ﬁnds men and women participating in differing types of care
reﬂecting the cultural division of labor based on sex (Stoller, 1990).

The caregiving model developed by Given, Collins, and Given (1988)
depicts the complex interrelationship between patient/caregiver characteristics,
type and quality of prior caregiver-patient relationships, caregiver reactions,
impact on caregiver physical and mental health, and the maintenance of the

caregiving role. While the caregiver characteristic of gender did not inﬂuence

42
distress associated with caregiving tasks in this study, the possibility that gender
may inﬂuence other aspects of the caregiving experience still exists. The model
allows for the possible positive caregiver reactions in response to caregiving.
Low to moderate amounts of distress with caregiving activities may lead to a
positive, or at least neutral, effect on caregiver well being, and may in turn
encourage maintenance of the caregiving role.

The caregiving model is broad enough to allow for the wide range of
patient/caregiver characteristics that extend beyond gender. As suggested by
study ﬁndings, time spent on caregiving tasks by the caregiver may have an
inﬂuence on distress experienced with caregiving tasks. The model supports the
conception that the interaction of time and caregiver activities may impact the
caregivers ability to maintain the caregiving role because of the inﬂuence of time
involved with caregiver tasks, on caregiver reactions.

Study ﬁndings also suggest that patient characteristics such as cognitive
dysfunction and ADL dependency needs are correlated with distress experienced
by the caregiver. Again, the model is useful for allowing the inﬂuence of patient
characteristics beyond gender on the caregivers reaction to caregiving. As
described by the model, caregiver health is impacted by the caregivers response
to caregiving, demonstrating the importance of caregiver reaction to caregiver
well-being. While study ﬁndings did not indicate distress levels that were
relatively high with respect to individual or groups of caregiving tasks, the model
would indicate some degree of impact on caregiver health. The model does not

demonstrate the degree of inﬂuence on caregiver health by varying degrees of

43

caregiver reactions, but merely that an interaction between the two concepts
occur.
WWWEQ

Because issues associated with dementia have become a major public
health issue, the CNS will need to deﬁne her/his role within the health care
delivery system in dealing with these issues. The CNS specializing in
gerontology is in a key position to inﬂuence the care of dementia patients and
the health and well being of their caregivers.

Recognizing the presence or absence of gender differences may assist the
CNS in developing intervention strategies that allow for the differing needs of
male and female spouse caregivers of dementia patients. Although there were
no signiﬁcant gender differences among spouse caregivers in this sample with
respect to distress associated with each caregiving task, ﬁndings did indicate that
certain tasks may cause moderate distress for both the husband and wife
caregiver. Although further research with a larger sample would prove more
conclusive to the general population, the CNS can use the information from this
study to increase her/his awareness that participation in caregiving tasks may
inﬂuence distress levels of both gender, and that time involved in each task may
have more of an inﬂuence on distress than gender itself. Based on this
information, the CNS may want to ask questions of the caregiver that would
provide information about the distress and time associated with caregiving
activities. For example, it may prove useful to inquire as to which caregiving
tasks the caregiver engages, and how much time the caregiver perceives he/she

spends on particular tasks. Caregivers may be asked to ﬁll in a pie-shaped

44

diagram indicating amounts of time (by areas of the pie) spent in task areas.
This information would help the CNS discover which task areas may be
associated with higher amounts of distress. Intervention strategies aimed at
decreasing time involved with speciﬁc tasks may help decrease distress levels and
improve the caregiver’s response to caregiving.

Integration of the concepts of the caregiving model used for the purpose
of discussion of this study, into a comprehensive nursing assessment would allow
for the nurse to more thoroughly evaluate the various aspects of the caregiving
situation, and the potential impact of various variables on caregiver reactions to
caregiving. The nurse must take into account that a variety of caregiving factors
may be working together in such a way as to inﬂuence caregiver reactions.
Using the model as a guide for assessing many of the possible aspects that
inﬂuence caregiving, the CNS can assess the potential for maintenance of the
caregiving role based on the variables that are interacting with the caregiving
environment. Counseling strategies may be needed to help balance the level of
interaction between variables in such a way as to enhance positive coping skills
among caregivers that may stimulate positive caregiving experiences.

According to Stetler and Marram (1978), the nurse needs to evaluate a
study’s ﬁndings for appropriateness of application of ﬁndings to clinical practice.
Similarity of characteristics of the sample and the study’s environment, to the
population with which the nurse works, and environment in which the nurse
practices are important in order to evaluate applicability to practice. It is also
necessary for the nurse to decide whether she/he needs to change her/his

practice based on the effectiveness of current intervention strategies. In

45
addition, it is helpful to evaluate the legal and ethical risks and resources

involved with application of study ﬁndings to a clinical practice situation, that is,
how feasible is it to implement study ﬁndings. Based on this evaluation, the
nurse may choose not to apply ﬁndings to her/his practice, or to apply ﬁndings
either directly or cognitively. Because of the limitations of this study, the CNS
may choose to use the information put forth in this thesis as a means for
increasing information in her/his ”theoretical approach to nursing” (Stetler &
Marram, 1978. p. 563). This cognitive application would be appropriate in this
study situation as the CNS uses this information to heighten her/his appreciation
for a given caregiving situation (Stetler & Marram, 1978). Direct application of
study results may not be possible due to limitations of the study ﬁndings
previously discussed.

Study ﬁndings indicate that men and women both assist with the same
types of caregiving activities, mean time scores were similar between the two
groups of caregivers, except with regard to time spent with transportation where
women seemed to spend more time than men with this task. Based on this
information, the CNS may reconsider any past gender bias that she/he has with
regard to caregiving activities and be aware that society’s image that caregiving
is largely a female endeavor (Miller & Cafasso, 1992), may not hold true in all
cases. The CNS can educate others in this area and promote a more realistic
view of the male role in caregiving situations.
WW

Does the concept gender differences in distress associated with caregiving

tasks need further investigation? A vast amount of literature is available on

46

burden, stress and distress associated with caregiving as well as gender and the
impact gender has on caregiver reactions. Based on the results of this study,
and the work of many researchers, it appears that the literature has adequately
dealt with these issues. However, little has been done to evaluate the impact of
caregiver reactions on the care recipient. This author proposes that information
about care outcomes based on caregiving demands are more important than any
gender differences that may exist among caregivers. Several questions remain
unanswered. Are patients with dementia well cared for by their spouse
caregivers and what variables inﬂuence good care? In what way do care
recipients respond to caregiver reactions, and in what way do caregiver reactions
such as distress inﬂuence certain patient outcomes? This author proposes
further research is necessary to adequately respond to these questions.

Using larger samples, it may prove interesting to investigate the
connection between current care recipient impairment and current caregiver
distress to determine whether perceived distress levels are actually reﬂective of
current caregiving demands or if they reﬂect more long term, accumulated care
demands.

Research needs to address the caregiver’s desire to participate in the
caregiving situation, and the implications this has on the caregiving experience.
Males may have an easier time avoiding the caregiving role, therefore, male
caregivers who have accepted the role may be those that want to participate in
caregiving. Perhaps self selection acts as an inﬂuence on psychological reactions
, and may explain any gender differences that do exist among spouse caregivers

with respect to various aspects of caregiving.

47

Participants in this study were predominantly white, and other race
populations and ethnic backgrounds were not adequately represented. Further
research for gender differences with speciﬁc caregiving tasks may prove useful
for describing other types of ethnic [race caregivers.

Other variables identiﬁed in this study as possible confounders for
distress, such as time spent on caregiving activities, caregiver age, and care-
recipient disability, may have a more signiﬁcant role in inﬂuencing caregiver
distress than gender, and may be worthy of further investigation.

Although dramatic conclusions cannot be drawn from study results with
this sample of caregivers, ﬁndings do support the need for further research in
other aspects of dementia caregiving among spouse caregivers and identiﬁes the

need to address the effectiveness of current nursing approaches.

APPENDICES

APPENDIX A

48
APPENDIX A

Caregiver Activities Scale
For each of the following caregiving activities, please tell me:

- how much me you spend performing the activity.
- how much distress, effort, or difficultly the activity causes you.

We are aware that some things you may spend a great deal of time doing may
not be bothersome for you. Yet, other things you only do occasionally may be
quite distressing for you. So, for each activity we would like you to indicate
both the amount of time and the distress it causes you. Place a check mark in
front of the answer which best describes the amount of time you spend in each
activity, and the amount of distress the activity causes you.

1. Medical or nursing treatments (giving medications, changing dressings, skin
care, exercises, etc. ):

11m: (‘3th one) Distress (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A small amount
Little or none

A moderate amount
A -all amount
Little or none

2. Personal care (bathing, toileting, feeding, getting dressed, etc.):

Iims (check one) Distress (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A mall amount
Little or none

A moderate amount
A -all amount
Little or none

3. Assistance with walking, getting in and out of bed, etc.:

Iirns (check one) . Dismiss (check one)

' __ A great deal _ A great deal
_ Quite a lot _ Quite a lot

49

_ A moderate amount __ A moderate amount
__ A small amount _ A small amount
__ Little or none _ Little or none

4. Emotional support (for the patient and/or others):

Iims (check one) Dism (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A small amount
Little or none

A moderate amount
A small amount
Little or none

5. Monitoring and reporting symptoms and progress:

In; (check one) Distress (check one)
__ A great deal __ A great deal

_ Quite a lot _ Quite a lot

_ A moderate amount _ A moderate amount
_ A small amount _ A small amount

_ Little or none _ Little or none

6. Providing transportation:

Iims (check one) 215m (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A small amount
Little or none

A moderate amount
A mall amount
Little or none

7. Managing ﬁnances, bills, and insurance forms related to this illness:

Little or none Little or none

Ijmg (check one) Distress (check one)
_ Agreat deal __ Agreat deal

_ Quite a lot _ Quite a lot

_ A moderate amount _ A moderate amount
'_ A small amount _ A mall amount

50
8. Adgjgignal household tasks (laundry, cooking, cleaning, etc.):

Iims (check one) m (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A mail amount
Little or none

A moderate amount
A mail amount
Little or none

9. Additional tasks outside the home (shopping for food and clothes, going to
the bank, running errands);

Iirns (ChGCk one) 12m (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A small amount
Little or none

A moderate amount
A small amount
Little or none

10. Structurinyplanning activities for your relative (recreation, meals, rest,
things for your relative to do, etc.):

This (check one) Distress (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A small amount
Little or none

A moderate amount
A small amount
Little or none

11. Managing behavior problems (moodiness, irritability, confusion, memory
loss):

Iirns (check one) Distreg (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A small amount
Little or none

A moderate amount
A small amount
Little or none

51

12. Coordinating, arranging, and managing services and resources (scheduling
appointments, arranging transportation, locating equipment and services, ﬁnding
outside help):

Inns (check one) PM (check one)
A great deal A great deal
Quite a lot Quite a lot

A moderate amount
A small amount
little or none

A moderate amount
A mail amount
Little or none

APPENDIX B

 

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52
Appendix B

MICHIGANSTATE
UNIVERSITY

lurch I3 . 133‘

10: Kathy Reid
5050 shady Creek Dr.
Huskegon, at 49441

RE: IRBS: SS-IIS

TITLE: GENDER DIFFERENCES AMONG SPOUSE CAREGIVERS OF
PATIENTS WITH DIMENTIA IN DISTRESS ASSOCIATED
WITH CAREGIVIRO TASKS

REVISION REQUESTED: R/A

CATEGORY: -3

APPROVAL DATE: 03/13/36

The university Committee on Research Involving human sub ects'lUCﬁInS)
review of this project is complete. I am pleased to adv se that the
rights and welfare of the human subjects appear to be adequately
r tected and methods to obtain informed consent are a ropriate.
.bgsefore. the UCRIHS approved this project and any rev sions listed
a.

Illlllbz UCRIas 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 a roval letter or when a
pro ect is renewed) to seek u te certification. There is a
max mum of four such expedite renewals ssible. Investigators
wishin to continue a reject beyond tha time need to submit it
again or complete rev ew.

RIVIIIOII: ucaras must review any changes in grocedures involving human
subjects. 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 CRIBS Chair, requesting revised
approval and referencin the project's IRE 8 and title. Include
in your request a descr ption of the change and any revised '
ins ruments, consent forms or advertisements that are applicable.

Should either of the followi arise during the course of he
work. investi ators must noti y UCRIHS promptly: (ll rob ems
(unexpected a 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.

f we can be of any future help please do not hesitate to contact us
: (517)355-2100 or sax (517)4 i- 171.

vid s. Wright. ra.o
ucaras Chair

Dﬂtbcd

cc: Clare Collins

APPENDIX C

53
APPENDIX C

ADL Dependency Scale

1. DRESSING: This category includes the entire process of dressing or
being clothed, including change from bed clothing into the set of clothing worn
during the day, and change to bed clothing at night. This category DOES NOT
include management of clothing during toileting. If your relative always wears
bed clothing during the day, answer ”NEVER DRESSED". Select the category
that best describes your relative’s level of functioning for DRESSING.

My relative...
_ IS INDEPENDENT -- (does not need help of another person in any
part of this activity.)

_ NEEDS SUPERVISION ONLY - (requires another person present
during the activity to instruct or watch for problems, but does not need the
physical help of another person.)

_ NEEDS SOME PHYSICAL HELP -- (requires physical help and the
presence of another during all or part of this activity.) RELATIVE
PARTICIPATES.

_ NEEDS TOTAL PHYSICAL HELP -- (needs another person to
carry out this activity.) RELATIVE DOES NOT PARTICIPATE.

_ NEVER DRESSED

2. EATING: This category includes all types of food and liquid taken by
mouth.
[Interviewer Includes all types of presentation used -- tray, ﬁnger
foods, etc.; client does not need to use utensils. Does not include
selection or preparation of food.]

My relative...
_ IS INDEPENDENT -- (does not need help of another person in any
part of this activity.)

_ NEEDS SUPERVISION ONLY -- (requires another person present
during the activity to instruct or watch for problems, but does not need the
physical help of another person.)

_ NEEDS SOME PHYSICAL HELP - (rcquires physical help and the
presence of another during all or part of this activity.) RELATIVE
PARTICIPATES.

54

_ NEEDS TOTAL PHYSICAL HELP - (needs another person to
carry out this activity.) RELATIVE DOES NOT PARTICIPATE.

3. GROOMING: This category includes the following activities: combing
or brushing hair, shaving, brushing teeth and cleaning dentures, cleaning and
clipping ﬁngernails. Select the category that best describes your relative’s level
of functioning for grooming.

My relative...
_ IS INDEPENDENT -- (does not need help of another person in any
part of this activity.)

_ NEEDS SUPERVISION ONLY -- (requires another person present
during the activity to instruct or watch for problems, but does not need the
physical help of another person.)

_ NEEDS SOME PHYSICAL HELP - (requires physical help and the
presence of another during all or part of this activity.) RELATIVE
PARTICIPATES.

_ NEEDS TOTAL PHYSICAL HELP - (necds another person to
carry out this activity.) RELATIVE DOES NOT PARTICIPATE.

4. BATHING: This category includes all activities of bathing, whether tub
or shower or bed bath: entry into tub or shower, wetting, soaping, rinsing, exit,
drying body. Does not include washing of head or drying hair. Does not
include dressing or undressing. Select the response that best describes your
relative’s level of functioning for bathing.

‘ My relative...
_ IS INDEPENDENT -- (does not need help of another person in any
part of this activity.)

_ NEEDS SUPERVISION ONLY - (requires another person present
during the activity to instruct or watch for problems, but does not need the
physical help of another person.)

NEEDS SOME PHYSICAL HELP - (requires physical help and the
presence —of another during all or part of this activity.) RELATIVE
PARTICIPATES.

_ NEEDS TOTAL PHYSICAL HELP - (needs another person to
carry out this activity.) RELATIVE DOES NOT PARTICIPATE.

5. WALKING INSIDE THE HOUSE: This category includes all upright
‘ movement on foot over the ﬂoor inside the house. MUST MOVE AT LEAST

55

FIVE FEET. May use cane, walker, crutches, or handrail. Select the response
that best describes your relative’s level of functioning for walking.

My relative...
_ IS INDEPENDENT - (does not need help of another person in any
part of this activity.)

__ NEEDS SUPERVISION ONLY -- (requires another person present
during the activity to instruct or watch for problems, but does not need the
physical help of another person.)

_ NEEDS SOME PHYSICAL HELP - (requires physical help and the
presence of another during all or part of this activity.) RELATIVE
PARTICIPATES.

_ NEEDS TOTAL PHYSICAL HELP -- (needs another person to
carry out this activity.) RELATIVE DOES NOT PARTICIPATE.

_ UNABLE TO WALK .. (will not bear weight.)

6. TOILETING: This category includes all those behaviors associated with
' bowel/bladder emptying: getting to and from toilet (or use of toileting
equipment such as bedpan), removal/adjustment of clothing, positioning on
toilet, cleaning of body parts, replacement of clothing. Select the response that
best describes your relative’s level of functioning for toileting.

My relative...
_ IS INDEPENDENT - (does not need help of another person in any
part of this activity.)

_ NEEDS SUPERVISION ONLY -’ (requires another person present
during the activity to instruct or watch for problems, but does not need the
physical help of another person.)

NEEDS SOME PHYSICAL HELP -- (requires physical help and the
presence —of another during all or part of this activity.) RELATIVE
PARTICIPATES.

_ NEEDS TOTAL PHYSICAL HELP -- (needs another person to
carry out this activity.) RELATIVE DOES NOT PARTICIPATE.

__ DEVICE - (catheter or ostomy is used.)

7. TRANSFERRING: This category includes movement to and from bed,
to chair or wheelchair, or set on toilet or commode. Devices, bars, and other
mechanical aids may be used. Select the response that best describes the
relative’s level of independence.

56

My relative...
__ IS INDEPENDENT -- (does not need help of another person in any
part of this activity.)

_ NEEDS SUPERVISION ONLY - (requires another person present
during the activity to instruct or watch for problems, but does not need the
physical help of another person.)

_ NEEDS SOME PHYSICAL HELP - (requires physical help and the
presence of another during all or part of this activity.) RELATIVE
PARTICIPATES.

_ NEEDS TOTAL PHYSICAL HELP - (needs another person to
carry out this activity.) RELATIVE DOES NOT PARTICIPATE.

_ REMAINS BEDFAST

8. BED MOBILITY: This category includes movement to avoid pressure
sores. May include sitting up in bed or on edge of bed. Devices, bars, trapezes,
and other mechanical aids may be used. Select the response that best describes
your relative’s level of functioning for bed mobility.

My relative...
_ IS INDEPENDENT - (does not need help of another person in any
part of this activity.)

_ NEEDS SUPERVISION ONLY - (requires another person present
during the activity to instruct or watch for problems, but does not need the
physical help of another person.)

_ NEEDS SOME PHYSICAL HELP - (requires physical help and the
presence of another during all or part of this activity.) RELATIVE
PARTICIPATES.

_ NEEDS TOTAL PHYSICAL HELP -- (needs another person to
carry out this activity.) RELATIVE DOES NOT PARTICIPATE.

APPENDIX D

57
APPENDIX D

Cognitive Functioning Scale

These next questions are about your relative’s mental functioning and need for
supervision. For each of the following, please select the answer that best
describes your rclative’s functioning.

1. ORIENTATION: Identify the individual’s orientation to person, place,
and time as it relates to their ability to function independently.

Oriented to person, place, and time: Knows who self and others
are in daily contact; knows where he/she is; knows day, month and
year.

Occasionally disoriented to person, place, or time, but is
sufﬁciently oriented to function independently if in familiar
surroundings.

Frequently disoriented.

Always disoriented.

2. JUDGMENT: Identify the individual’s ability to use judgment, make
decisions, and conduct activities that affect their ability to function
independently.

Judgment is good. Makes appropriate decisions (e.g., choosing
clothes).

Judgment is occasionally poor; needs monitoring and guidance in
decision making.

Judgment is frequently poor; needs protection and supervision
because person makes unsafe or inappropriate decisions (e.g.,
where and when to smoke).

Judgment is always poor; cannot make any appropriate decisions
for self.

MEMORY: Identify the individual’s ability to remember and use

information appropriately.

Does not have difﬁculty remembering and using information.
Does not require directions or reminding from others.

58
Has minimal difﬁculty remembering and using information.

Requires occasional direction and reminding from others. May be
able to follow written instructions.

Has difﬁculty remembering and using information. Requires
frequent direction and reminding from others. Cannot follow
written instructions.

Cannot remember or use information. Requires continual verbal
reminding.

WANDERING: Identify individual’s tendency to wander away from

home.

Wandering is leaving home without purpose or with inappropriate

purpose and without a relationship to needs or safety.

Does not wander and can walk.
Does not wander; is chairbound or bedbound.

Wanders outside but is not a danger to self (or would wander
outside if not prevented from doing so by you or others).

Wanders outside and is a danger to self (or would wander outside
and be a danger to self if not prevented from doing so by you or
others).

AWARENESS OF OWN NEEDS: Identify the degree to which the
individual understands their needs relating to health, and safety.

Understands own health and safety needs.
Sometimes does not understand health and safety needs.
Usually does not understand health and safety needs.

Does not understand own health and safety needs.

NIGHT NEEDS: Identify the individual’s need for assistance during the

night.

Does not require care or supervision from another person during
the night.

Requires minimal care and supervision.

Requires substantial care and supervision. Provider cannot usually
get at least ﬁve hours of sleep during an eight-hour period.

59

Requires constant care and supervision.

GENERAL SUPERVISION: How much overall supervision does your
relative require. Choose the response which best describes your relative’s
situation.

Can be left alone all day.

Can be left alone for periods of more than two hours during the
day.

Can be left alone for brief periods of less than two hours during
the day.

Must be watched constantly if awake.

LIST OF REFERENCES

LIST OF REFERENCES

Alzheimer’s Disease and Related Disorders Association, Inc. (1990).
W (Publication Number Ed. 228Z, 2302).

American Psychiatric Association. (1994). W
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B'arusch, A. S. & Spaid, W. M. (1989). Gender differences in caregiving:
Why do wives report greater burden? W (5), 667-676.

Carey, P. J., Oberst, M. T., McCubbin, M. A., & Hughes, S. H. (1991).
Appraisal and caregiving burden in family members caring for patients receiving

chemotherapy. W18 (8), 1341-1348.

Collins, C., Stommel., M., Given, C. W, & King, 8. (1991). Knowledge
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patients W (2). 84-90

Corcoran, M. A. (1992). Gender differences in dementia management
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W (11). 1006-1012.

Economics and Statistics Administration. (1994). W
W (114 th ed.). U. S. Department of Commerce. Bureau of the
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Enright, RB. (1991). Time spent caregiving and help received by spouses
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Farran, C. J, Keane-Hagerty, E., Tatarowicz, L., & Scorza, E. (1993).
Dementia care-receiver needs and their impact on caregivers. W
W (1). 86-97

Fitting M, Rabins, P. Lucas, M. J., Eastham, J. (1986). Caregivers for
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Gallagher-Thompson, D., Brooks III, J. O., Bliwise, D., Leader, J., &
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symptoms, and cognitive decline In Alzheimer’ s Disease. MW
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George, L. K., & Gwyther, L. P. (1986). Caregiver well-being: A
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W29 (3). 253-259.

Given, C. W. Collins, C. E., & Given, B. A. (1988). Sources of stress
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W (1). 69-82

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