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thesis entitled

Predictors of Exclusive Care Provision by
Primary Caregivers of Dementia Patients

presented by
Nga-Lee Shum

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of the requirements for

Masters Nursing

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PREDICTORS OF EXCLUSIVE CARE PROVISION BY
PRIMARY CAREGIVERS OF DEMENTIA PATIENTS

By

Nga-Lee Shum

A THESIS

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

MASTER OF SCIENCE IN NURSING

College of Nursing

1998

ABSTRACT

PREDICTORS OF EXCLUSIVE CARE PROVISION BY PRIMARY
CAREGIVERS OF DEMENTIA PATIENTS

By

Nga-Lee Shum

This study investigated five factors, including caregiver gender
and employment status, relationship and living arrangement of
caregiver and care recipient, and care-recipient’s functional disability,
that predict whether a caregiver of a demented elderly serves as the
exclusive care provider or shares caregiving tasks with secondary
caregivers in the community. It was a secondary analysis of data from
the first waves of two panel studies conducted at Michigan State
University by Barbara A. Given and Charles W. Given, Principal
Investigators. The sample included 265 primary caregivers who cared
for care-recipients with dementia. Using logistic regression analysis,
the caregiver employment status, the caregiver/care-recipient
relationship, and the care-recipient functional disability were shown to
be significant predictors of being exclusive care providers.
Implications for nursing practice and future caregiving research are

presented.

To my husband Mingher and our new child Eric

iii

ACKNOWLEDGMENTS

I am especially grateful to professors who gave their support to this
paper. I would like to thank my thesis chair Dr. Manfred Stommel for his
patient guidance of my efforts throughout the thesis process.

I would like to acknowledge my appreciation to Dr. Louise Selanders
for her support not only with this paper but through the course of my
graduate study.

A special thank you to Dr. Joan Wood for sharing knowledge, and her

time and efforts as member of my committee.

iv

TABLE OF CONTENTS

LIST OF TABLES ....................................................................................... vii
INTRODUCTION
Statement of the problem .................................................................... 4
Research questions ............................................................................. 5
LITERATURE REVIEW
Caregiving involvement ...................................................................... 5
Living arrangement ............................................................................... 8
Employment status ................................................................................ 9
Gender ................................................................................................ 11
Caregiver and care recipient relationship .......................................... 13
Functional disability of care recipient ............................................... 15
Research hypotheses ........................................................................... 16
METHODS
Research design ................................................................................. 17
Sample ................................................................................................ 17
Data collection Procedures ................................................................ 18
Operational definitions of study variables ........................................ 18
Analytic approach .............................................................................. 20
Protection of human rights ................................................................ 20
RESULTS
Sociodemographic characteristics of sample .................................... 21
Logistic regression results ................................................................. 25
DISCUSSION
Interpretation related to literature ...................................................... 34
Methodological limitations ................................................................ 37
Implications for advanced nursing practice ...................................... 38

Recommendations for filture research ......................................................... 44

APPENDICES
Appendix A: Patient Cognitive Scale ............................................... 46
Appendix B: UCRIHS Approval ...................................................... 47
LIST OF REFERENCES ............................................................................ 48

vi

LIST OF TABLES

Table 1 - Demographic Characteristics of Caregiver and Care Recipient
.................................................................................. 22

Table 2 - Mean, Standard Deviations, and Ranges of Selective
Caregiving, Caregiver and Care Recipient’ Background

Information ............................................................... 24

Table 3 - Frequencies and Percents of the Dependent Variable in the
Sample ....................................................................... 25

Table 4 - Logistic Regression Predicting Exclusive Care by Caregiver
(Model 1) ................................................................... 27

Table 5 - Logistic Regression Predicting Exclusive Care by Caregiver:
On All Independent Variables Except the Living
Arrangement Variable (Model 2) ............................... 29

Table 6 - Cross-Tabulation Results of Gender by Exclusive Care by
Caregiver .................................................................... 30

Table 7 - Cross-Tabulation Results of Family Relationship by Exclusive
Care by Caregiver ............................................................. 30

Table 8 - Cross-Tabulation Results of Gender by Exclusive Care Among
Spousal and Non-Spousal Caregivers .............................. 31

Table 9 - Cross-Tabulation Results of Gender by Employment Status ...... 31

Table 10 - Cross-Tabulation Results of Care Employment Status by
Exclusive Care by Caregiver ............................................ 31

vii

Table 11 - Cross-Tabulation Results of Gender by Exclusive Care by
Caregiver Among the Not Employed and Employed
Caregivers ......................................................................... 32

Table 12 - Cross-Tabulation Results of Family Relationship by Caregiver
and Care Recipient Living Arrangement .......................... 33

Table 13 - Cross-Tabulation Results of Living Arrangement by

Exclusive Care by Caregiver Among Non-Spouse
Caregivers ................................................................. 33

viii

INTRODUCTION

Dementia is among the most common cognitive disorders found
in older people (Reifler, 1990). Among the various dementias,
Alzheimer’s disease is the most frequent and accounts for about 66% of
all dementia cases (Office of Technology Assessment, 1987). Dementia
elders may experience forgetfulness, confusion, and phases of
absentmindedness over time; the disease affects the brain progressively.
Ordinarily the person will compensate for the early symptoms; neither
the victim nor those around her/him may suspect a medical problem at
first. The slow but progressive damages to the brain often are not
noticed until the person experiences greater than normal stresses,
pressures, or losses that stretch her/his coping abilities to the breaking
point. The individual gradually loses intellectual capacities,
demonstrates impaired occupational functioning, becomes unable to
perform social roles, and ultimately depends on others for assistance
with activities of daily living (Pallett, 1990). Therefore, throughout the
disease process, family caregivers are responsible for the supervisory
and direct-care needs of the patient. In the early stages, caregivers take
over higher-level functions, such as managing medications and
finances. As the dementia advances, caregivers become increasingly
involved with self-care tasks such as bathing, dressing, and feeding.

Patient safety becomes a widening concern, and problems such as

incontinence often develop. Behavioral problems, such as patient
depression, agitation, and wandering, are rated as most stressful by
caregivers, as they can occur unpredictably and often require
continuous monitoring (Haley, Brown, & Levine, 1987; Teri, et al.,
1992)

The role of informal helpers is clearly critical in maintaining a
functionally dependent dementia elder in the community. At the
present time, formal services (services given by paid professional care
providers) play a much more limited and supplementary role than do
informal services (unpaid care provided by family members, relatives,
and friends). Even when an older person receives both kinds of care,
informal care predominates (Stommel & Collins, 1994; Tennstedt,
Sullivan, McKinlay, & D’Agostino, 1990; Tennstedt, Harrow, &
Crawford, 1996).

In addition to stresses directly related to caregiving, families
often experience secondary stresses that proliferate as a result of the
caregiving career (Pearlin, Mullan, Semple, & Skaff, 1990).
Competing demands may produce family conflict, strains on finances
and employment, and changes in self-concept as caregiving spills over
into all aspects of life (Stephen & Franks, 1995).

The literature on elder caregiving indicates that, typically,
multiple caregivers provide assistance to frail elders. These studies
report caregiving support systems averaging between two and four
persons per elder with between 21% to 33% of elders having a single

caregiver (Given, King, Collins, & Given, 1988; Stone, Cafferata, &

Sangl, 1987; Tausig, Fisher, & Tessler, 1992; Tennstedt, McKinlay, &
Sullivan, 1989).

Many caregivers seek assistance with their caregiving duties from
both formal and informal sources (Alel, 1990; Brody & Schonover,
1986; Brody, Johnsen, F ulcomer, & Lang, 1983). The extent of this
assistance is related to the gender of the primary caregiver, the
structure of sibling networks, the type and level of disability of the care
receiver, employment status, living arrangement, family history and so
on (Coward & Dwyer, 1990; Matthews & Rosner, 1988; Stommel,
Given, Given, & Collins, 1995; Stone, Cafferata, & Sangl, 1987).

Informal caregiving is specially important in the case of dementia
elderly. There are few formal services specifically geared towards this
population since dementia patient care is long-term care that is usually
not precipitated by an acute hospital episode. With no specific skills
required for this kind of care, formal services do not cover it, and the
care is not reimbursed. In addition, due to the progressive and
irreversible nature of the disease, there is very little rehabilitation
potential for the patients. Furthermore, caregiving for dementia people
is usually a long drawn out process typically lasting between 9 and 15
years from onset to death. During this time, the elderly progressively
deteriorate both mentally and physically imposing ever greater
psychological and physical burdens on the primary caregiver. With few
or no formal services available, the crucial question becomes: do
primary caregivers get any assistance at all from other family members
or friends to relieve them at least temporarily from their care burdens?

Those caregivers who have an “empty caregiving network”, i. e., who

4

have no additional helpers to provide hands-on care to the elderly at
home, are particularly vulnerable.

In order to identify such primary caregivers, who are most
vulnerable to negative psychological consequences as a result of
inadequate support, it is particularly important to find the caregiver and
care recipient characteristics which contribute to the lack of support
from both informal and formal sources.

This study focuses on the identification of predictive factors, which
may yield information that enables advanced practice nurses (APNs) in
primary care settings to assess the family’s circumstances. With the
assurance that some situational clues help us identify problem cases, the
APN is more likely to be more supportive in helping to arrange the
appropriate caregiving strategies. Knowing those factors may make a
difference in what the APN decides to do or suggest as a course of action.
Statement of the Problem

Little is known about factors that predict whether a caregiver of a
demented elderly serves as the exclusive provider, i.e., gets no
hands-on physical help from other providers, or shares caregiving tasks
with secondary caregivers. In particular, lack of information on certain
caregiver and care recipient characteristics, including the gender of the
primary caregiver, the living arrangement of primary caregiver and
care-recipient, the primary caregiver’s relation to the care recipient, the
caregiver’s employment status, and the care recipient’s functional
disability, that contribute to being an exclusive care provider to the
dementia care recipients. If these factors are predictive, the health care

professional will be able to identify primary caregivers who are at risk

for inadequate support, and thus be in a better position to assist the
primary caregivers with the added responsibilities of caregiving. The
focus of this investigation is to examine and describe those caregiver
and care recipient characteristics that predict the likelihood of being an
exclusive care provider among primary caregivers of dementia patients.
Research Questions

The research questions for this study are as follows:

1) Does the gender of the primary caregiver predict the
likelihood of receiving hands-on assistance from secondary
providers?

2) Does the employment status of the primary caregiver predict
the likelihood of receiving hands-on assistance from
secondary providers?

3) Does the living arrangement of the primary caregiver and
care recipient predict the likelihood of receiving hands-on
assistance from secondary providers?

4) Does the relationship between the primary caregiver and the
care recipient predict the likelihood of receiving hands-on
assistance from secondary providers?

5) Does the care recipient’s level of functional disability predict
the likelihood of receiving hands-on assistance from
secondary providers?

LITERATURE REVIEW
Carggivinglnvolvement
Many home care studies have shown that informal care of the

elderly at home is achieved mainly by a primary family caregiver with

the assistance of other caregivers (Miller & McFall, 1991; Stoller &
Puglesi, 1991; Stone, Cafferata, & Sangl, 1987), and that older people
receive assistance from a network of helpers (Horowitz & Dobrof,
1982; Tennstedt, McKinlay, & Sullivan, 1989). The word “primary
caregiver” implies that there are also secondary caregivers available,
but this is not always the case in actual experience.

One study documented the caregiver support network and
examined its influence on the experience of the primary caregiver for a
sample of caregivers of impaired older persons 6 weeks after they left
the hospital following treatment for a stroke or a hip fracture. Nearly
7% of the 242 primary caregiver/older person dyads reported caring for
the older person without aid from anyone else, and the remaining 93%
of the primary caregiver/older person dyads included one to six
secondary helpers with direct care (Penrod, Kane, Kane, & Finch,
1995).

Data drawn from the 1982 National Long-Term Care Survey has
shown that approximately 70% of the 2201 subjects, which represented
2.2 million persons caring for 1.6 million disabled elders, were primary
caregivers with the remainder playing a secondary role. About
one-third of the primary caregivers did not receive any assistance from
other informal or formal caregivers and devoted an average of 4 hours a
day to caregiving activities. Another one-third of the respondents were
primary caregivers with one or more unpaid helpers and provided 4.4
hours of care per day. Finally, 10% of the primary caregivers received

paid help in addition to unpaid assistance, and spent 5.4 hours each day

to elderly care (Stone, Cafferata, & Sangl, 1987). Thus, it appears that
greater patient demands result in greater use of secondary caregivers.

The National Long-Term Demonstration or Channeling
Demonstration Project, investigated experiences of primary caregivers
caring for elderly persons (age 65 years and older) with ADL or IADL
impairments, cognitive or behavioral difficulties who were at risk of
institutionalization in the community. Based on these data, Stephens
and Christianson (1986) found that 40% of all primary caregivers
(N=1940) were the only source of informal care for the elderly care
recipient, and devoted 5.7 hours per day to provide care.

A community-based research study with a random sample of 635
frail elders and their 429 primary caregivers revealed that primary
caregivers alone supplied much more care than secondary caregivers.
Care by secondary caregivers was supplementary (different helpers
engaged in the same care tasks jointly) rather than complementary
(different helpers engaged in different care tasks). In this study,
primary caregivers provided, on average, 57 hours per week while
secondary helpers provided 20 hours per week. Care recipients with
only a primary caregiver received 67 hours of informal care per week,
whereas those with both primary and secondary caregivers received
only 64 hours of care per week. Finally, elders with spousal primary
caregivers used the least amount of formal services, whereas elders
with nonrelatives as primary caregivers utilized the most (Tennstedt,
McKinlay, & Sullivan, 1989).

In another research study, 233 spouses and adult children who

assumed more responsibilities than anyone else caring for

brain-impaired adults at home were selected. Findings indicated that
primary caregivers spent almost 89 hours each week giving care, and
received a total of 19 hours each week of help from unpaid family and
friends (14 hours) and paid sources (5 hours) combined (Enright, 1991).

Using data from the first wave of two longitudinal studies which
included 504 spouse and child caregivers of Alzheimer’s or dementia
patients and elderly care recipients with a variety of physical
impairments, the division of labor between primary caregivers and
other care providers was examined. Primary caregivers performed the
bulk of the care: on average, almost 80% of all the care was provided
by the primary caregiver which ranged from 8.6% to 100%. Half of
this care was performed by the caregiver in an exclusive mode, i.e., as
specialized or only provider, whereas half of this care was performed in
a supplemental mode, i.e., shared with other providers (Stommel,
Given, Given, & Collins, 1995).

Finally, the amount of care assistance that the caregivers received
affected how many hours per week they themselves provided care to the
frail elderly. That is to say, caregivers are likely to spend more hours
of caring per week when there are fewer people to assist the caregiver
on a regular basis (Merrill, 1991).

Living arrangement

Despite the limited number of studies focusing on a primary
caregiver’s and care recipient’s living arrangement in relation to getting
additional hands-on assistance from formal and/or informal resources,
several investigations did offer some insight into this issue. For

instance, primary caregivers living with a noninstitutionalized disabled

9

care recipient are more likely to assume full responsibility and to be the
only providers. By contrast, primary caregivers with informal and/or
formal help are less likely to share the household with the care
recipients (Stone, Cafferata, & Sangl, 1987).

Using data from the Channeling Experiment, Kemper (1992)
indicated that the amount of care received by the disabled elderly was
large, namely 46 hours per week on average. Of this care, 27 hours per
week was provided by primary caregivers living in the same
households, but only 12 hours per week by primary caregiver living in
separate households.

Finally, secondary helpers’ contributions to hands-on care of the
impaired older persons was the focus of a study conducted by Penrod,
Kane, Kane, & Finch (1995). Results showed that the average number
of secondary helpers was smaller when the primary caregiver and care
receiver shared a household.

Empltfiment status

Although a number of studies have reported that employed
caregivers provide about as many hours of assistance as do those who
are not employed, other studies have found that caregiver employment
is significantly associated with the amount or the number of hours spent
giving care. The number of weekly hours of unpaid help provided by
each caregiver depends on the type of employment. F ull-time
employment, when compared with no market work, reduced informal
caregiving by 20 to 25 hours per week, but part-time employment had
no statistically significant effect on hours of caregiving (Boaz &

Muller, 1992; Boaz, 1996).

10

Seventy seven women who were both working full-time and as
primary caregivers for an elderly family member reported that they
spent an average of 16 hours per week in caregiving. This average
figure was nearly the equivalent of a half-time job. In addition, almost
half of the sample (47%) obtained no help in caregiving from their
families (Gibeau & Anastas, 1989).

Though employed and not employed married daughters’ average
contributions of help per week to their widowed mothers differed
significantly for only two (personal care and meal preparation) out of
the seven tasks, Brody & Schoonover (1986) found that this difference
was accompanied by the increased involvement of various other
providers. Thus, when daughters worked, the combined contributions
of various members of the informal network and helpers paid by the
family offset the fewer hours of help given by working daughters
themselves. Also, the support networks of the working caregivers were
more complex than those in the nonworking group. That is to say,
when daughters were in the labor force, their caregiving networks
tended to involve a greater number of helpers in more varied
combinations.

In another study, married working and non-working daughters as
principal caregivers caring for their noninstitutionalized elderly
mothers were the target of the investigation. This study reported that
employed daughters provided fewer hours of care per week when
compared to non-working daughters. In addition, mothers whose
working daughters had not considered reducing their working hours or

quitting their jobs received more help from all sources each week than

11

mothers whose daughters were considering quitting their jobs, not
working, or had just left the labor force (Brody, Kelban, Johnsen,
Hoffman, & Schoonover, 1987).

Primary caregivers who work and care for brain-impaired family
members received more help from a combination of sources, i.e., family
members, friends, and paid services than those not employed. There
were 28 weekly hours of combined help for working primary caregivers
and 13 weekly hours of combined help for non-working caregivers
(Enright, 1991).

Similarly, compared with primary caregivers who were employed,
not employed caregivers who care for elderly had a lower probability of
receiving high levels of involvement from secondary caregivers (Given,
Given, Stommel, & Lin, 1994), had a smaller than average number of
secondary helpers (Penrod, Kane, Kane, & Finch, 1995), and used a
greater number of hours of paid help (Enright & Friss, 1987).

Mar.

Like other forms of domestic labor, care for the elderly continues
to be allocated on the basis of gender. There are significant gender
differences in the provision of care. In almost every category of
caregiving help, women offered higher levels of overall assistance to
elderly care recipients than did men (Anastas, Gibeau, & Larson, 1990;
Coward & Dwyer, 1990; Finley, 1989; Honeywell, Inc., 1986;
Horowitz, 1985; Stoller, 1990). Caregiving studies have shown that
informal caregivers to the frail aged were primarily female, and spent
an average of 16 hours a week in this caregiving role (Stone, Cafferata,

& Sangl, 1987; Wood, 1987). Even in mixed-gender family networks,

12

women caregivers supplied more hours per day in caregiving activities
than did their male counterparts (Coward & Dwyer, 1990). In addition,
male primary caregivers differ from female primary caregivers in that a
woman’s responsibilities of caring for a chronically ill relative tend not
to be shared (Brody, 1990).

Gender differences are believed to influence the amount of care
provided and access to social resources that may alleviate caregiver
strain. An investigation employing data from a subsample of 554
spouse caregivers from the 1982 National Long Term Care Survey of
Caregivers of the Frail Elderly reported that overall, the level of help
received from others was low: 62% of the spouse primary caregivers
had no other helpers; 60% had no backup help; and 90% did not receive
any paid help. In particular, male spouse primary caregivers used more
paid help than female spouse primary caregivers although they had less
backup helpers when comparing to female spouse primary caregivers
(Miller, 1990).

In regard to the difference between husbands and wives in giving
informal care, it has been reported that elderly husbands were more
likely to receive support from both informal and formal caregivers
(John, 1983). Among caregiver husbands and wives, 60% of the wives
and 55% of the husbands were the sole providers of care and provided
care with no informal or paid assistance (Stone, Cafferata, & Sangl,
1987)

Daughters or daughters-in-law who provided care were twice as
much likely as sons to assume the primary responsibility with no

assistance (Stone, Cafferata, & Sangl, 1987), and spent more hours

13

each week in parent-care than did sons (Montgomery & Kamo, 1989;
Stoller & Earl, 1983).
Caregiver and care recipient relationsth

Assistance to frail elders from informal caregivers outside the
immediate family is rare. Friends and neighbors may provide crisis or
short-term help, particularly when family members are not available to
provide direct care, but their involvement typically does not extend to
day-to-day tasks of caregiving (Cantor, 1983; Litwak, 1985; Stoller,
1990)

Several studies have shown that caregiving involvement of
primary caregivers and the amount of help from other care providers
were associated with the relationship of the primary caregiver to the
elderly. Spousal primary caregivers had fewer persons helping them
with caregiving tasks (Given, Stommel, Collins, King & Given, 1990).
Wives received less assistance from family members and friends than
did adult daughters (Enright, 1991).

Tennstedt, McKinlay, & Sullivan (1989) reported that one quarter
of the elders (N=791) had only one caregiver. Among those with both
primary caregivers and secondary caregivers, there were significant
(p < .00) differences in the average amounts of informal care depending
on the relationship of the primary caregiver to the elder: spouses, in the
primary caregiver role, provided the most help of all caregivers and are
much less likely to have assistance with care from secondary
caregivers. Other family members, who provided less care on average

than spouses have more secondary caregiver involvement. Thus, if the

14

primary caregiver was a spouse, the older person was less likely to have
informal help from other caregivers.

Similarly, it was found that spousal primary caregivers were less
likely to receive direct help from secondary caregivers than adult
children, friends, or more distantly related relatives (Matthews &
Rosner, 1988; Penrod, Kane, Kane, & Finch, 1995).

In her study of 167 post discharge individuals aged 65 years and
older, Johnson (1983) indicated that when the primary caregiver was a
spouse, 51% of all care, including transportation, housekeeping,
legal/financial, meal preparation, and shopping was provided by the
spouse. However, when the primary caregiver was a child, 58% of all
care came from other sources.

In another study, interviews were conducted with 315 white
women who were providing care in the community to a spouse
diagnosed with Alzheimer’s disease or a related disorder. Pruchno
(1990) found that caregiving spouses performed extensive hands-on
care for their impaired partners and had minimal assistance from other
people. About 30% of the caregivers had no helpers at all.

As part of a longitudinal study focusing on spouse and adult child
primary caregivers’ perception of social support to dependent elderly, it
was found that adult child primary caregivers received more assistance
from their family and friends in the amount of instrumental support
than did spouse primary caregivers (Lyles, King, Given, & Given,
1990)

Finally, among 196 primary caregivers who were spouses,

daughters, and daughters-in-law, 59% of the spouse caregivers reported

15

low involvement by secondary caregivers, regardless of whether they
were living alone or with others. In contrast, nonspouse caregivers who
lived alone or with another were significantly more likely to experience
high involvement of secondary caregivers (Given, Given, Stommel, &
Lin, 1994).

Functional disability of care rechpient

It is known that more hours of care per week from the caregiver is
associated with greater impairment of the elder care recipient. When
compared to elders who have less than 3 limitations in the daily
functions of personal care, caregivers who helped those with 3 to 5
limitations devoted 5.5 additional hours of care, and 12 additional
hours to elders with 6 to 7 limitations (Boaz & Muller, 1992).

The likelihood of the older person in the community using formal
home care at 6 weeks after hospital discharge increased with each
additional ADL impairment (Penrod, Kane, Kane, & Finch, 1995).

Likewise, a study assessed the extent to which formally provided
comprehensive community care tended to substitute for informal care
provided by family and friends to impaired elderly persons (N=124)
living in the community. Greene (1983) indicated that the level of
ADL impairment of the elderly was the most statistically significant
single predictor of level of formally provided support. That is, more
seriously ADL-impaired individuals received higher levels of formal
supportive care.

Based on cross-sectional data, the number of people assisting the

primary caregiver increased with greater functional dependencies of the

16

patient. Formal service use was the highest at the most severe level of
functional impairment elder (Tennstedt, McKilay, & Sullivan, 1989).

Research examining the impact over time of changes in older
people’s health and functional capacity on the composition of their
support network revealed that with the onset of a decline in health
status, persons received assistance from sources increasingly distant
from the older persons (Stoller & Pugliesi, 1988).

Another study which explored both formal and informal sources
of instrumental support for older persons of varying levels of functional
capacity residing in the community found that caregiving support
networks increased in size as the level of capacity of the older persons
decreased (Stoller & Earl, 1983).

Research hypotheses

Based on the findings in the current literature, the research
questions are formulated into the following specific hypotheses as a
more precise guide to the research.

Hypothesis 1: Female primary caregivers are less likely to
receive hands-on physical assistance from secondary providers.

Hypothesis 2: Not employed primary caregivers are less likely to
receive hands-on physical assistance from secondary providers.

Hypothesis 3: Primary caregivers who live with the care
recipient are less likely to receive hands-on physical assistance from
secondary providers.

Hypothesis 4: Spousal primary caregivers are less likely to
receive hands-on physical assistance from secondary providers.

Hypothesis 5: Primary caregivers are less likely to receive

17

hands-on physical assistance from secondary providers when
care recipients’ levels of functional disability are low.
METHODS

In this section, the research design, sample, data collection
procedure, operational definitions of study variables, analytic approach,
and protection of human rights are discussed.
Research Desigg

The present study is a secondary data analysis of information
from the first waves of two panel studies entitled “Impact of
Alzheimer’s Disease on Family Caregivers” (Given & Given, 1987),
and “Caregiver Responses to Managing Elderly Patients at Home”
(Given & Given, 1989).
Salads

The sample for the analysis (N=265; 1987 study: N=229, 1989
study: N=3 6) comes from two convenience samples of family
caregivers of relatives with dementia who reside in the community.
Criteria for selection of caregiver and care recipient dyads in both panel
studies were similar and included the following:

1. The care recipient was a least 55 years of age.

2. The care recipient had to be dependent in at least two activity

of daily living (ADL) or instrumental activity of daily living
(IADL).
3. The care recipient had received a diagnosis of Alzheimer’s

Disease or other progressive dementia.

l8

4. The caregiver was self-identified as the family member
providing the most care to the care recipient with dementia
(i.e. primary caregiver).
5. The care recipient and caregiver were residing in the
community at the time of data collection.
Data Collection Procedures
Subjects for both studies were initially recruited through an
extensive mailing distributed by local chapters of the Alzheimer’s
Association, the Michigan Association of Adult Day Care Centers and
health agencies in southwest Michigan. Caregivers who were eligible
to be included in the study participated in a personal or telephone
interview and completed a mailed self-administered booklet. These
primary caregivers were the exclusive source of information for
themselves and the person for whom they were caring. Results from
both interview and the self-administered booklet were then compiled
and entered into the computer for analysis.
Operational Definitions of Study Variables
Independent variables
Gender -- Female and male primary caregivers were identified based on
self-report.
Employment status -- Primary caregivers were divided into working full
time, part time or not employed groups.
Relationships -- Primary caregivers were identified as husbands, wives,
sons, daughters, sons/daughters-in-law, brothers/sisters-in-law, other

relatives, friends, or formal care providers. Because of the small

19

numbers of non-spouse caregivers, in the current study, spouses will be
compared to all non-spouse caregivers.
Living arrangements -- The sample was divided according to whether
the primary caregiver and the care recipient lived in the same
household or lived apart based on primary caregiver’s self-report.
Physical impairment -- The primary caregiver rated the care recipients’
dependency in any of 25 activity areas including the traditional ADL
(walking, eating, bathing, dressing, toileting, grooming) and IADL
(shopping, cooking, etc.). Also included were various health and
medical care tasks requiring special skills such as giving injections,
tube feeding, or catheter care.
Mental impairment -- Patients’ mental health as characterized by their
cognitive behaviors was measured. The measure was a scale composed
of seven 4-points Likert items that describe a patient’s level of mental
activity and alertness. It was developed by Given and Given (1989),
and its reliability and validity has been confirmed with Alzheimer’s
patients in two samples: Cronbach’s alpha = .87, and .89 (Stommel,
Given, & Given, 1990). High numbers represent greater level of
cognitive impairment.

Dependent variable
Involvement of other helpers -- Each time the existence of a patient
dependency was confirmed, the primary caregiver was asked to indicate
how often she/he and how often other people helped with ADLs and
IADLs activities during a typical week. Answer categories included no
involvement (0), once a week (1), several (two to six) times a week

(3.5), once a day (7), and several times a day (14).

20

From the information on both the involvement of primary
caregivers and other helpers, a simple index was constructed, i.e., a
score of 1 if only the primary caregiver was involved, and a score of 0
if others were also involved. Those primary caregivers who scored 1
across all tasks are the sole, exclusive providers of hands-on care to
their care recipients. Thus, an overall dichotomous index was created:
a score of 1 was equal to being an exclusive provider, and 0 was equal
to being a non-exclusive provider (or having other helpers), as the
criterion outcome variable in this study.

Analytic Approach

Given the dichotomous outcome variable and a mix of
independent variables (both categorical/nominal and interval level
measures), logistic regression was utilized as the appropriate statistical
model (Demaris, 1990). This model can be used to predict the changes
in the odds of being an exclusive care provider depending on variations
in the independent variables which represent characteristics of the
primary caregiver and the care recipient.

Protection of Human Rights

The original studies were reviewed and approved by the
University Committee on Research Involving Human Subjects
(UCRIHS) at Michigan State University. Consent for the longitudinal
studies was obtained by the Researchers regarding participation in the
study. An explanation of the research study and goals, the nature of the
questions to be asked, and assurances of anonymity were provided each
participant as part of the letter of explanation. Signed consent forms

were required from both caregiver and care recipient.

21

The use of this secondary data was approved by UCRIHS at
Michigan State University. There were no new risks to the subjects
who participated in the original study. Confidentiality was provided by
the use of case numbers versus names in the current data set.

RESULTS
Sociodemographic Characteristics of Sample

The sociodemographic information in the present study covers
age, gender, education, living arrangement, relationship of primary
caregiver and patient, employment status, household income, patient’s
functional status, and total number of care activities provided by
caregivers. According to Table 1 and 2, the age of the caregivers
ranged from 27 to 86 years with a mean age of 62 years and a standard
deviation of 11.2 years. The majority of the caregivers were
Caucasians (97%). They were husbands (23%), wives (45%), daughters
(19%), sons (9%), daughters/sons-in-law (1.5%), brothers/sisters-in-law
(1.5%), and others (1%) in relation to care recipients. Slightly less than
three quarters (74%) of them were women. Most of the respondents
(88%) were married, 6% had never married, and 6% were widowed,
divorced or separated. In terms of educational achievement, 8% had
grade school education, 8% had attended some high school, 24% had
high school diplomas, 38% had some college education, and 22% had
baccalaureate or higher degrees. About 70% of the caregivers were not
employed at the time of the interview, but 11% were working full-time
and 19% were working part-time. The care recipient household income
varied greatly, ranged from $1000 to $152,503, with an average of
$25,790, and standard deviation of $18,183. A great majority (94%) of

22

primary caregivers lived with their care recipients, and the remainder

lived apart from the care recipients.

Table 1 - Demographic Characteristics of Caregiver and Care Recipient

 

 

 

 

 

 

 

 

Caregiver Care recipient
(N=265) (N=265)
Gender
Female 195 (73.6%) 136 (51.3%)
Male 70 (26.4%) 129 (48.7%)
Marital Status
Single 17 (6.4%) 3 (1.1%)
Married 232 (87.5%) 189 (71.3%)
Widowed 8 (3.0%) 72 (27.2%)
Divorced/Separated 8 (3.0%) 1 (0.4%)
Race/Ethnicity
White/Caucasian 256 (96.6%) 255 (96.4%)
Black 9 (3.4%) 9 (3.4%)
Other 0 (0%) l (0.4%)
Education
Grade school 21 (7.9%) 60 (22.8%)
Some high school 21 (7.9%) 47 (17.9%)
High school graduate 64 (24.2%) 60 (22.8%)
Some college 100 (37.7%) 44 (16.7%)
BA/BS degree 30 (11.3%) 34 (12.9%)
Higher degree 29 (10.9%) 18 (6.8%)

 

 

23

Table l (cont’d)

 

 

 

 

 

 

N Percentage
Caregiver employment status
Not employed 185 69.8
Part-time 28 10.6
Full-time 52 19.6
Caregiver and care recipient living arrangements
Live together 248 93.6
Live apart 17 6.4
Caregiver relation to care recipient
Husband 61 23.0
Wife 119 44.9
Daughter 51 19.3
Son 23 8.7
Daughter/Son-in-law 4 1 .5
Brother/Sister-in-law 4 l .5
Other 3 1.1
No. of people living in care recipient household
1 9 3.4
2 166 62.6
3 58 21.9
4 28 10.6
5 4 1.5

 

 

 

 

24

Table 2 - Mean, Standard Deviations, and Ranges of Selective Caregiving,
Caregiver and Care Recipient’ Background Information

 

 

 

 

 

 

Mean SD Range
Age
Caregiver 62 11.2 27-86
Care recipient 73 8.5 55-99
Care recipient household income $25,790 $18,183 $1,000 ~ 152,503
Care recipient functional status
ADL score 5.2 3.5 0 ~ 10
Cognitive deficit score 1.7 0.7 0 ~ 3
Total No. of dependencies 13.4 4.7 2 ~ 22
(25 tasks)
Total No. of instances of assistance
(25 tasks)
Caregiver 35.6 16.6 2 ~ 78
Other provider 16.7 16.7 0 ~ 73

 

 

 

 

Of the 25 caregiving tasks, including ADLs, IADLs, and medical
care tasks, the total number of care activities primary caregivers
provided ranged from 2 to 78, with an average of 36 care activities
(SD = 17). However, other providers were involved in fewer instances
of care assistance than primary caregivers, which varied from 0 to 73,
with an average of 17 instances of assistance activities (SD=17).

The age of the care recipients ranged from 55 to 99 years with a
mean age of 73 years and a standard deviation of 8.5 years. Most of the
care recipients were Caucasians (96%). The numbers of female and

male care recipients were similar (51% vs 49%). Majority of the

 

25

care recipients (71%) were married, 1% had never married, and 28%
were widowed, divorced or separated. Educational achievement among
care recipients was from grade school to BS/BS degrees, with 7% had
higher degrees. Most (63%) of the care recipients had two persons
living in their households, 34% had three to five people coresiding with
them, and only 3% lived alone.

Care recipients’ functional status was measured in three areas,
including dependency on activity of daily living, cognitive status, and
episodes of negative/aggressive behaviors. On average, care recipients
had 5 dependencies on help for ADLs, with ranging from 0 to 10
dependencies. In addition, they had moderate cognitive disability with
a mean cognitive deficit score of 1.7 (SD=0.7). In sum, care recipients’
average functional limitation of the 25 caregiving tasks was 13
dependencies, ranging from 2 to 22 dependencies (SD = 4.7).

Logistic Reggession Results

Information on frequencies of primary caregivers who are
exclusive care providers or receive outside assistance in this study is
presented in Table 3. Overall, 14% of the primary caregivers are the
sole care providers without any hands-on assistance from secondary

providers, but 86% of them do share caregiving tasks with others.
Table 3 - Frequencies and Percents of the Dependent Variable in the Sample

F Percent
'ver without hel 37 14

'ver with hel 228 86
Total 265 100

 

In order to address the five specific hypotheses of this study, an

initial simple logistic regression model was run containing all five

26

potential predictors of a caregiver’s odds of being an exclusive care
provider. Considering the high correlation between the living
arrangement variable and the caregiver/recipient relationship variable, a
second model was created excluding the living arrangement variable.

Table 4 presents the results of the first logistic regression
analysis. These results suggest two significant determinants of being
the exclusive care provider: caregiver employment status and care
recipient’s total number of dependencies. Consistent with previous
studies, these findings show that, when comparing not employed to
part-time caregivers or part-time caregivers to full-time caregivers, the odds
of being the exclusive provider are reduced each time by 48% (odds ratio =
.52). In other words, the odds of a part-time caregiver receiving no
assistance are half those of a not employed caregiver, and a full-time
employed caregiver has again half the odds of a part-time caregiver of not
receiving assistance. Thus, the odds of a full-time caregiver being the
exclusive care provider when compared to a not employed caregiver are one
in five. Similarly, the functional limitations of the care recipients have a
significant effect on the outcome variable. Since the variable is a count of
the number of fimctional dependencies, for each additional care recipient
dependency, the odds of being the exclusive provider decline by 20%
(1 - 0.80 = .20). That means when the care recipient demonstrates higher
functional dependency, he/she is less likely to have a primary caregiver who
does all the care alone. Instead, the primary caregiver shares caregiving
tasks with other providers.

In the model presented the variables of caregiver gender, caregiver’s

relation to the care recipient, caregiver and care recipient living

27

arrangement, and care recipient cognitive deficit fail to reach statistical
significance.
Overall, in terms of goodness of fit, the logistic regression (Model 1)

predicts the outcome accurately in 87% of the cases.

Table 4 - Logistic Regression Predicting Exclusive Care by Caregiver (Model 1)

 

 

 

 

 

 

 

Predictor Wald Odds- Sig.
Ratio

Caregiver gender .89 .61 .35
(O=female, 1=male)
Caregiver employment 4.74 .52 .03 *
(0=not employed, 1=part-time, 2=full~time)
Relationship .00 1.02 .97
(1=spouse, 0=others)
Living arrangement .11 1871.29 .74
(0=live apart, 1=live together)
Care recipient total No. of dependencies 17.65 .80 .00 *
(1 ~ 22)
Care recipient cognitive deficit score .09 .90 .75
(1 ~ 3)

 

 

 

 

 

Model Chi-square = 38.95 df = 6 p = .0000
Overall goodness of fit = 86.80% N=265

 

From the results of Model 1 (Table 4), it can be seen that the
caregiver and care recipient relationship to the outcome variable is not
statically significant. One of the reasons is that, in multivariate analysis,
family relationship is confounded with living arrangement. In this sample,
spousal caregivers always live together with their care recipients, but among

the non-spousal caregivers, this is not always the case. Since family

 

28

relationship and living arrangement overlap so much, that essentially means,
that we cannot disintangle what effect is contributed by family relationship
as opposed to living arrangement. In other words, the two variables are so
highly correlated with each other that they no longer show any independent
effect.

Based on the above rationale, a secondary logistic regression was
constructed (Model 2) excluding the caregiver and care recipient living
arrangement variable (Table 5). With very slight differences in the odds
ratios, the results are generally consistent with the previous model, i.e.,
caregiver employment status and care recipient functional disability remain
statistically significant. However, there is an important difference now.
That is, the caregiver and care recipient relationship is also statistically
significant. Since the dummy variable is coded 1 for spousal caregivers, 0
for non-spousal caregivers (mostly child caregivers), the odds of being the
exclusive provider among spousal caregivers are almost three times as large
as the odds of being the exclusive provider among non-spousal caregivers
(Odds ratio = 2.79). Thus, spousal caregivers have three times the odds of
non-spousal caregivers to care for their care recipients alone. All other
predictive factors are consistent with the results in Model 1.

As a whole, the logistic regression predicts the outcome accurately in
80% of the cases in the Model 2.

In order to further elaborate the findings, two-way and three-way
cross-tabulation techniques are applied and the sample results are presented
here also.

Although caregiver gender is not a statistically significant

determinant of being the exclusive provider, the sample results remain

29

Table 5 - Logistic Regression Predicting Exclusive Care by Caregiver: On All
Independent Variables Except the Living Arrangement Variable

 

 

 

 

 

 

 

 

 

 

 

(Model 2)
Predictor Wald Odds- Sig.
Ratio

Caregiver gender .00 .97 .93
(O=female, 1=male)
Caregiver employment 9.44 .46 .00 *
(0=not employed, 1=part-time, 2=full-time)
Relationship 5.71 2.79 .02 "'
(1=spouse, 0=others)
Care recipient total No. of dependencies 25.40 .81 .00 *
(1 ~ 22)
Care recipient cognitive deficit score .02 .96 .88
(1 ~ 3)
Model Chi-square = 56.40 df=5 p=.0000

Overall goodness of fit = 80.4% N=265

 

suggestive (Table 6). 16% of the female caregivers do not receive any help
while 84% get assistance. Thus, the sample odds of being an exclusive
provider are .19 (16/84=. 19) among female caregivers. That means every 1
in 6 female caregivers is the sole care provider in the study sample.
However, the odds of being an exclusive provider are .10 (9/91=.099)
among male caregivers, that is, only 1 in 11 male caregivers serves as the
only care provider. According to the ratio of the two odds between female
and male caregivers, the odds of being exclusive provider among female
caregivers are twice as high as among male caregivers, i.e., a female is twice
as likely to be an exclusive provider as male. While this pattern in the

sample data is suggestive and consistent with expectations, the gender effect

 

30

was not statistically significant, which means, it may be due to sampling

chance.

Table 6 - Cross-Tabulation Results of Gender by Exclusive Care by Caregiver

 

 

 

 

I Caregiver Without Help Caregiver With Help I
| Male 9% 91% 1
| Female 16% 84% |

 

 

According to cross-tabulation results (Table 7), spousal caregivers

(16%) are more likely to be exclusive care providers than daughter/son

caregivers and daughter/son-in-law caregivers combined (8%).

Table 7 - Cross-Tabulation Results of Family Relationship by Exclusive Care by

 

 

 

 

Caregiver
Caregiver Without Caregiver With Help Total
Help
Spouse 16% (29) 84% (151) 100% (180)
Daughter/Son 8% (6) 92% (72) 100% (78)
Daughter/Son-in—law
Other 29% (2) 71% (5) 100% (7)

 

 

 

 

 

 

When controlling for gender in addition to relationship (Table 8),

female caregivers are more likely to be the sole care providers than male.

Specifically, among spousal caregivers, 19% of the wives and only 10% of
the husbands are without any assistance for caregiving activities. Moreover,
among non-spousal caregivers, 10.5% of the female caregivers and none of
the male caregivers are without any help for caregiving activities. In
contrast, a large majority of husband caregivers (90%) and all male relatives

caregivers (100%) share care tasks with others.

31

Table 8 - Cross-Tabulation Results of Gender by Exclusive Care Among Spousal and
Non-Spousal Caregivers

 

 

 

 

 

 

 

 

Caregiver Without Caregiver With Help Total
Help
Husbands 10% (6) 90% (55) 100% (61)
Wives 19% (23) 81% (96) 100% (1 19)
Other male relatives 0% (0) 100% (9) 100% (9)
Other female relatives 10.5% (8) 89.5% (68) 100% (76)

 

 

 

The relationship between gender, employment status and exclusive

provision of care is explained in Table 9 and Table 10. As expected,

women are less likely than men to be employed when assuming the

caregiving responsibility. Among female caregivers (Table 9), 81% are not

employed while approximate one-fifth (19%) are employed either part-time

or full-time. By contrast, among male caregivers, only 51% are not

 

 

 

employed.

Table 9 - Cross-Tabulation Results of Gender by Employment Status
I Not employed Part-time Full-time Total 1
I Female 81% (135) 12% (20) 7% (12) 100% (167) I
I Male 51% (50) 8% (8) 41% (40) 100% (98) I

 

 

 

 

 

When comparing not employed caregivers to part-time and full-time

caregivers (Table 10), the not working caregivers are more likely to be the

exclusive care providers than the working groups combined. That is, 20%

of the not employed caregivers and 7.5% of the employed caregivers are

without any assistance

Table 10 - Cross-Tabulation Results of Care Employment Status by Exclusive Care

 

 

 

 

by Caregiver
Caregiver Without Help Caregiver With Help Total
Not employed 20% (31) 80% (l 54) 100% (l 85)
Part-time 7% (2) 93% (26) 1 00% (28
F ull-time 8% (4) 92% (48) 100% (52)

 

 

 

 

 

 

32

When comparing the not employed to the employed caregivers among
men and women separately (Table 11), the not employed caregivers are
more likely to perform the caregiving activities alone, regardless of their
gender. That is, 12% of the not working men do not receive any help from
other providers, but all of the employed men share caregiving tasks with
others. Moreover, 18.5% of the not employed women are without any help

from others but only 10% of the working women are without assistance.

Table 11 - Cross-Tabulation Results of Gender by Exclusive Care by Caregiver
Among the Not Employed and Employed Caregivers

 

 

 

 

 

 

Caregiver Without Help Caregiver With Help Total

Male (not 12% (6) 88% (44) 100% (50)
employed)

Female (not 18.5% (25) 81.5% (110) 100% (135)
employed)

Male 0% (O) 100% (20) 1 00% (20)
(employed)

Female 10% (6) 90% (54) 100% (60)
(employed)

 

 

 

 

 

As stated earlier, the caregiver and care recipient relationship is
confounded with living arrangement. Cross-tabulation (Table 12) reveals
that 94% of the caregiver/recipient dyads live together versus 6% of the
caregiver/recipient dyads live apart, with all husbands and wives living

together.

Table 12 - Cross-Tabulation Results of Family Relationship by Caregiver and Care

Recipient Living Arrangement

 

 

 

 

 

 

Caregiver/Care Caregiver/Care Row Total
Recipient live Recipient live
together apart

Spouse 180 0 68% (180)
Daughter/Son 65 13 29% (78)
Daughter/
Son-in-law
Other 3 4 3% (7)
Total 94% (248) 6% (l 7) 100% (265)

 

 

 

 

 

Caregiver and care recipient living arrangement affects the
proportion who get no help from other providers among non-spousal
caregivers (Table 13). When non-spousal caregivers and their care
recipients share the same household, 12% of them are exclusive care
providers. However, when non-spousal caregivers and their care
recipients live apart, all of them receive assistance from other providers
and never do they provide care alone. Overall, a small percentage (9%)
of the non-spousal caregivers are without any help from other providers
no matter whether they live together with or live apart from the care

recipient.

Table 13 - Cross-Tabulation Results of Living Arrangement by Exclusive Care by
Caregiver Among Non-Spouse Caregivers

 

 

 

 

 

 

 

 

 

Caregiver Without Caregiver With Help Total
Help
Caregiver/care 0% (0) 100% (17) 100% (17)
recipient live apart
Caregiver/care 12% (8) 88% (60) 100% (68)
recipient live together
Total 9% (8) 91 % (77) 1 00% (8 5)

 

34

DISCUSSION
Interpretation Relateflo Literature

This study investigated five primary caregiver and care recipient
characteristics, including caregiver’s gender and employment status,
caregiver/care recipient relationship and living arrangement, and care
recipient’s functional status. It was hypothesized that all of these
characteristics would be associated with the odds of a family primary
caregiver to serve as the exclusive provider or share caregiving
responsibility with secondary caregivers. The results of the
multivariate analysis suggested three significant determinants of being
the exclusive care provider: the primary caregiver’s employment status,
the care recipient’s total number of dependencies, and the caregiver and
care recipient relationship.

The logistic regression model showed that the odds of a part-time
caregiver receiving no assistance were half those of a not employed
caregiver, that a full-time employed caregiver had again half the odds
of a part-time caregiver of not receiving assistance, and that the
full-time caregiver had only one quarter the odds of being the exclusive
care provider when compared to a not employed caregiver. The reasons
for the employment effect are that full-time employment reduces
informal caregiving hours per week (Boaz & Muller, 1992) and
caregiving networks of employed caregivers tend to involve a greater
number of helpers (Brody & Schoonover, 1986).

The study results also indicated that for each additional care
recipient dependency, the odds of being the exclusive care provider

declined by 20%. These results support the findings of Tennstedt,

35

McKilay, & Sullivan (1989), i.e., the higher the number of functional
dependencies demonstrated by the care recipient, the less likely the
primary caregiver does all the care independently, and greater the
likelihood will the primary caregiver share caregiving tasks with other
providers.

The last significant predictor of being the exclusive care provider
was the caregiver and care recipient relationship. The findings
revealed that the odds of being the exclusive provider among spousal
caregivers were almost three times as large as the odds of being the
exclusive provider among non-spousal caregivers (mainly child
caregivers). Consistent with previous findings, which did not
specifically focus on dementia patients, spousal caregivers had fewer
persons helping them with caregiving tasks (Given, Stommel, Collins,
King, & Given, 1990), and were less likely to have assistance with care
from secondary caregivers than did adult child caregivers (Enright,
1991; Penrod, Kane, Kane, & Finch, 1995; Tennstedt, McKinlay, &
Sullivan, 1989).

Studies have revealed that the primary caregiver usually assumes
full responsibilities and is the only care provider (Stone, Cafferata, &
Sangl, 1987) to the frail elderly, or have small numbers of secondary
helpers if they share households with their patients (Penrod, Kane,
Kane, & Finch, 1995). This study supports these findings: among
non-spousal primary caregivers in the sample, 12% receives no
additional hands-on assistance from others when they live with their
care recipients, and none of the non-spousal primary caregivers

provides the care alone if they live apart from their care recipients.

36

Although caregiver gender was not a significant predictor of
being the exclusive care provider, cross-tabulation results in this study
showed that among female caregivers, every one in six caregivers was
the sole care provider, whereas, among male caregivers, every one in
ten caregivers was the only care provider. This pattern was consistent
with expectations that a woman is more likely than a man to be a
primary caregiver and provide the care without any assistance (Brody,
1990; Stone, Cafferata, & Sangl, 1987). Yet, after controlling for the
effects of employment, relationship, care recipient dependencies and
cognitive deficits in the multivariate logistic model, this gender effect
disappears suggesting that it is due to these other factors.

Pruchno (1990) reported that about 30% of female spousal
caregivers who care for a patient with Alzheimer’s disease or a related
disorder, had no helpers at all. However, in this study, only 19% of
female spousal caregivers were the sole care provider to the dementia
care recipient. This may be due to the sampling differences in two
studies, such as age of the primary caregivers (70 vs 62), and primary
caregiver and care recipient relationship (spouses only vs spouses and
children). In addition, the physical and cognitive deficits of the
dementia care recipient may not be equal in both studies. It is possible
that the primary caregiver cared for more severe functionally disabled
care recipients in this study than in Prucho’s study. It also possible that
primary caregivers substantially under-report or over-report the true
extent to which others were involved in providing care.

Again, the current study shows a relatively low percentage of

primary caregiver who do not obtain any assistance (14%) when

37

compared to previous research findings which ranged from 25% to 62%
of primary caregiver who did the care alone. Those studies did not
target specifically dementia care recipients, but focused on caregiving
provided to elders who had various medical problems including
dementia, stroke, hip fracture, or Parkinson’s disease (Miller, 1990;
Stephen & Christianson, 1986; Stone, Cafferata, & Sangl, 1987;
Tennstedt, McKinlay, & Sullivan, 1989). The difference may result
from the unique demands that dementia patient care places on a primary
caregiver, such as the need to handle a patient’s behavioral problems
due to cognitive deficit as compared to the need to care for his/her
ADLs and IADLs only, which may decrease the likelihood of being the
exclusive care provider. Thus, it seems that caregivers caring for care
recipients with physical dependencies lead to more outside assistance,
but caregivers caring for care recipients with cognitive deficits do not
get that much outside help.

Given the total number of weekly instances of assistance across
25 tasks by the primary caregiver (36 instances) and the mean age of
the primary caregivers (62 years old), this data suggests that elderly
spousal caregivers, who themselves may be frail, may be less able to
assist dementia care recipients with such activities as bathing or
assisting with mobility than the younger caregivers.
Methodological Limitations

One of the limitations of this study was the use of a convenience
sample. The sample only included caregiver/recipient dyads who used
adult day care centers, health agencies or were included on the

Alzheimer’s Association mailing list. It is possible that caregivers

38

connected with these types of agencies may receive support services
that ease a general sense of burden, and thus allow caregivers to be
more tolerant of the demands associated with caregiving tasks.
However, the sample did not encompass caregivers who are “doing it
alone”, who do not seek outside assistance or perceive that no
assistance is necessary. In turn, these may influence the extent of being
an exclusive care provider.

The reader should be cautious in generalizing these research
findings to clinical settings. The lack of random selection of study
participants limits the usefulness of study results.

Although most of the dementia caregivers are spouses in general,
homogeneity among primary caregivers in relation to care recipient may
influence the significance of findings. Most of the subjects in this
research were spousal primary caregivers (68%); this fact restricted the
comparison of various relationships between the primary caregiver and
care recipients, and limited further informative findings.

Dementia care is a complex process that encompasses the family
and not just a single individual. A limitation of this analysis is that it
disregards the distinction between family and professional support.
Implications for Advancgl Nursing Practice

The findings of this study would require minimal cost to
incorporate into practice but would require the APN to use his/her case
management role to provide the necessary holistic care to both the
caregivers and their dementia patients. The APN may use the research

role to replicate this study to determine the significance of predictors of

39

being an exclusive care provider by the primary caregiver of dementia
patient over time.

Upon entry into the health care system, the assessment of primary
caregiver and care recipient characteristics, including caregiver’s
employment status, caregiver’s and care recipient’s living arrangement,
and care recipient’s functional status, is important before making
recommendations for change in the current caregiving situation.
Recognizing these factors may make a difference to the APN in
anticipating and identifying primary caregivers who perform the daily
caregiving responsibility alone, and who are at risk for inadequate
support, i.e., the primary caregiver who is the spouse of care recipient,
not employed, and caring for care recipient with fewer functional
disabilities. This information may assist the APN in developing
intervention strategies that are based on a family’s unique caregiving
needs. For instance, an attempt to mobilize potential family social
support networks to give the primary caregiver “time out” on a regular
basis is crucial to the not employed caregivers. This may help them to
continue their caregiving role and to relieve the burden of performing
the role. Providing some amount of formal services to primary
caregivers and/or teaching the caregivers how to do the caring may be
of interest to the working primary caregivers. Teaching the necessary
skills in areas of weakness of the caregivers is necessary, when they
care for dementia care recipients with more functional disabilities.
This can help them to gain confidence and to decrease time involved

with specific tasks. All of such strategies would need to be negotiated

40

with the primary caregiver and delivered in a manner perceived as
helpful.

Knowing the caregiver is the spouse of the care recipient,
attention must be drawn to the potential fact that he/she is the exclusive
care provider, and provides high level of overall care. As a result, the
APN needs to be aware of the caregiver’s health status and his/her
ability to performing the caregiving tasks safely and exclusively. In
addition, the adult child caregivers may need assistance in setting
priorities to manage the competitive demands of multiple roles, i.e.,
patient care, employment, marriage, or dependent child care. For
caregivers caring for dementia patients with fewer functional
disabilities, open communication about the diagnosis of dementia and
the nature of dementia may help the caregiver to make sense of the
disturbing behaviors of the dementia patient, enable families to explain
the patient’s behaviors to others, and encourage families to plan ahead.

When a primary caregiver is the spouse of the care recipient, not
employed, and caring for the care recipient with fewer functional
deficits, this caregiver has a greater probability of being the exclusive
care provider. This group of primary caregivers is an especially
vulnerable population which deserves the APN’s attention and priority
care. Discovering the reasons of being an exclusive care provider
would be critical before initiating care assistance. For instance, some
long-term caregivers may have developed expectations according to
which they feel that they alone are responsible for providing care to
their dementia spouses. Thus, they have minimized the degree to which

they rely on children, relatives, or friends. The use of a reliable

41

behavior profile targeted to dementia sufferers can also be helpful to
the primary caregiver and the APN. The caregiver can use the
frequency of a behavior to plan the necessary degree of assistance and
supervision. He/she can also complete the profile and refer to it to see
how behaviors change and how their perception of problems change. If
the frequency of numerous behaviors changes abruptly, an underlying
medical condition may have developed. Medications might need to be
reviewed. APN should have this knowledge when performing the
clinician role. If the person has not been diagnosed, the completed
profile will provide information to the APN about the individual’s
functioning and the caregiver’s concerns. Especially when a person is
not testable, reliable family information can offer a more complete
picture of functioning based on the profile. As a counselor, the APN
can use the profile to identify quickly behavior areas that are of great
concern to the caregiver and thus provide additional support and/or
interventions. For example, if the dementia person’s wandering
behavior is a concern to the primary caregiver, interventions should be
taken immediately. At first, it helps to understand the possible causes
of the wandering, such as if the wandering is an attempt to gain
something (stimulation, food, security, or physical activity), a response
to stressful environmental factors (too much noise or demands placed
on the person), a reaction to fear, or created by medications. Then
teach the caregiver specific strategies to handle it successfully, such as
supervising the wandering constructively by walking with the dementia
person in a safe and moderately stimulating area, involving him/her in

an activity that helps burn off excess energy or ask him/her to do

42

something with the caregiver, placing locks on outside doors that
cannot be undone by the impaired person but which the caregiver can
open easily, having the dementia person wear a MedAlert—type bracelet
with his/her name and phone number on it, and so on. A physical
examination on the dementia person can indicate the potentially
dangerous outcomes of the wandering behavior, such as burn marks or
bruises that come from unconsciously touching the stove or fall.
Finally, in order to ensure the quality of formal care and informal care
provided to the caregiver and the care recipient, evaluation of the care
outcomes must be done on each caregiver and patient’s follow up visit.
An APN evaluation of the actual caregiving involvement by the
primary caregiver and/or other providers is essential even if the primary
caregivers are not predicted to be the exclusive care provider. The
APN may want to ask questions of the primary caregiver that would
provide information about the time associated with caregiving
activities. For example, it may prove useful to know the specific caring
tasks required of the caregiver; the caregiver’s perceived time spent on
particular tasks, the number of instances of assistance the primary
caregiver provides in a typical week, or number of hours spent in a day.
Being the only informal care provider to a dementia care recipient
in a relatively long period of time places the primary caregiver at risk
of suffering from negative psychological consequences. The APN must
remember to explore the mental health of the caregiver. The APN’s
determination of the caregiver’s ability to meet caregiving demands is
crucial for the positive well-being of the caregiver. The APN may use

her/his counseling role to evaluate the mental health status of the

43

caregiver and provide assistance when the caregiver is in need of
emotional support.

The APN should prepare to address the concerns of caregivers
across all stages of dementia. Caregivers look to the APN for much
more than medical evaluations; they also view the APN as a key source
of information and referrals. Because many caregivers initially present
the dementia patients for evaluation in primary care settings, there is a
need for the APN to improve detection of dementia and initiate referral
and education of caregiving families during early stages of dementia.
APNs are in the prime position to deliver holistic care and examine all
aspects of the caregiving process.

On the other hand, some primary caregivers of dementia patients
choose not to access the formal system. They isolate themselves from
the society, either because of the extensive time demand of caring that
restricts them from social activities, or their perceptions of
unavailability of informal or formal services. The APN must be aware
of the presence of this hidden population in the community, find a way
to discover them, and assist in providing care for both the dementia
patients and their primary caregivers. In addition, it is necessary to
understand that this problem can be offset to some extent if the
caregiver is well supported by other family members or their
community.

Information on resources of formal support should be given to
primary caregivers, including home helps, meals on wheels, laundry

services, visit from district nurses, and the provision of day care and

44

respite care, enabling them to continue functioning, as well as
improving the quality of life of the dementia patient.

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

Recommendations for future Research

Now that the characteristics of primary caregiver’s employment
status, care recipient’s functional status and caregiver and care
recipient relationship have been shown to be factors that predict a
caregiver to be an exclusive care provider, further research on the topic
needs to be done. Longitudinal research studies need to be undertaken
to examine the predictive relationships between these factors and being
the sole provider over time. Do the predictive effects between these
variables remain stable; do they change; and what influences the
change?

This study focused on the evaluation of five predictors (primary
caregiver’s gender and employment status, primary caregiver and care
recipient relationship and living arrangement, and care recipient’s
functional status) of exclusive care provision by primary caregivers of
dementia patients. Future research on this topic needs to include other
variables that have the potential to be predictors of being the only care
provider, such as primary caregiver’s physical and mental health,

household income, etc.

45

An experimental study that would examine factors that can be
manipulated and that predict primary caregiver well-being would be
interesting. Such an intervention study could include a time-out
arrangement for exclusive care providers to see if it leads to the
avoidance of negative psychological effects on the primary caregiver.

On the other hand, as the health care system continues to seek
ways to transfer responsibility for continuing care from the formal
system to the family system, future research needs to examine how the
formal system can assist caregivers to manage caregiving in
cost-effective ways that will promote and achieve optimal patient
outcomes, especially for the primary caregiver who is not sharing care
duties with others. For example, the outcomes of patients cared for by
spouses who have no assistance might be compared with age and
problem matched patients cared for by spouses assisted by families
and/or formal care providers.

Participants in this study were predominantly female, spouses,
and white. Future research should attempt to persuade more male
caregivers, nonspousal caregivers and minority caregivers to participate
in research studies. Research studies also need to find a way to include
the elusive caregivers who have isolated themselves and their dementia
patients from formal caregiving programs or who have chosen not to

use services or seek assistance in their caregiving role.

APPENDICES

APPENDIX A

46

APPENDIX A
Patient Cognitive Deficit Scale

Primary caregivers were asked: “How frequently has your relative
displayed the following behaviors?” Answers categories included “not
at all” (=0), “sometimes” (=1), “most of the time” (=2), “always” (=3).
The scale includes the following seven items:

Does your relative recognize familiar people?

Does your relative seem confused?

Does your relative forget what day it is?

Does your relative get the present mixed up with the past?

Does your relative ever forget where he/she is?

Does your relative ever forget important or recent events?

Does your relative repeat himself/herself or ask the same question

over and over again?

Cronbach’s Alpha = .87

APPENDIX B

 

OFFICE OF
RESEARCH
AND
GRADUATE
STUDIES

University Committee on
Research Involving
human Subject:
(UCRIHS)

Mtcmgan State UnwerSIty
246 Administration BUIIDIRQ
East Lansing. MICDIgan
48824-1046

517/355~2180
FAX 517/432-1171

The Michigan State UMVE/Slfy
IDEA IS InSIIlUllonal Diversuy
facet/ence in Action

llf‘n‘ .. .. . ..s --

47

APPENDIX B

MICHIGAN STATE

UNIV

ERSITY

March 5, 1998

TO: Manfred Stommel . .
A-230 Life Sciences Building

RE: IRB#:

98-075

TITLE: PREDICTORS OF EXCLUSIVE CARE PROVISION BY

PRIMARY CAREGIVERS OF DEMENTIA PATIENTS

REVISION REQUESTED: N/A
CATEGORY: l-E
APPROVAL DATE: 02/13/98

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

herefore,
above.

RENEWAL:

REVISIONS :

PROBLEKS/
CHANGES:

the UCRIHS approved this project and any reVisions listed

UCRIHS approval is valid for one calendar year, beginning with
the approval date shown above. Investigators planning to
continue a prOJect beyond one year must use the green renewal
form (enclosed with t e original agprovaI Ietter or when a.
prOJect is renewed) to seek u date certification. There is a
maximum of four such expedite renewals possible. Investigators
wishing to continue a prOJect beyond that time need to submit it
again or complete reView.

UCRIHS must review any changes in procedures 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 CRIHS Chair, requesting revised
approval and referenCing the project's IRB # and title. Include
in your request a description of the change and any revised
instruments, consent forms or advertisements that are applicable.

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

If we can be of any future helpé lease do not hesitate to contact us

at (517)355-2180 or FAX (517l4

Si 1

   

Dav'

DEW:bed

171 .

1, E. Wright, Ph.D.
UCRIHS Chair

cc: Nga-Lee Shum

LIST OF REFERENCES

48

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