American Journal of Alzheimer's Disease and

Other
Dementias
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The characteristics of dementia caregiving onset

Joseph E. Gaugler, Sarah B. Wackerbarth, Marta Mendiondo, Frederick A. Schmitt and Charles D. Smith
AM J ALZHEIMERS DIS OTHER DEMEN 2003 18: 97
DOI: 10.1177/153331750301800208
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The characteristics of dementia caregiving onset

Joseph E. Gaugler, PhD
Sarah B. Wackerbarth, PhD
Marta Mendiondo, PhD
Frederick A. Schmitt, PhD
Charles D. Smith, PhD

Abstract
This study examined the characteristics of entry into
the caregiving role for family and friends of older adults
suffering from dementia. Using data from a large community survey of informal caregivers of patients who visited the University of Kentuckys Alzheimers Disease
Research Center (n = 1055), respondents were classified
into one of four onset sequences: recognition-diagnosis,
care provision, recognition-care, and diagnosis dependent. A multinomial logistic regression identified several
characteristics (i.e., caregiver income, time since onset,
care recipient gender, care recipient living status, and
primary caregiver identification) that were significantly
associated with various caregiving onset patterns. The
findings describe the complexity of the entry process and
its potential association with health-related transitions
in the caregiving career.
Key words: Alzheimers disease, caregiving, dementia,
onset patterns

Introduction
Research on dementia caregiving has grown considerably over the past two decades. Much of this effort has
Joseph E. Gaugler, PhD, Sanders-Brown Center on Aging, The
University of Kentucky, Lexington, Kentucky.
Sarah B. Wackerbarth, PhD, Sanders-Brown Center on Aging, The
University of Kentucky, Lexington, Kentucky.
Marta Mendiondo, PhD, Sanders-Brown Center on Aging, The
University of Kentucky, Lexington, Kentucky.
Frederick A. Schmitt, PhD, Sanders-Brown Center on Aging, The
University of Kentucky, Lexington, Kentucky.
Charles D. Smith, PhD, Sanders-Brown Center on Aging, The
University of Kentucky, Lexington, Kentucky.

focused on describing family caregivers of Alzheimers

patients and the burdens associated with care provision.1
Many early studies were cross-sectional in design, but
there was still recognition that family caregiving occurred over long periods of time, often several years or
more.2 Consequently, recent prospective longitudinal
studies have found that caregiving is a dynamic process
influenced by a number of key transitions, such as institutionalization and bereavement.3-7 Fewer studies examine onset or entry into the caregiving role. The purpose
of the present study is to describe sequences of caregiving onset among an Alzheimers clinic population of
patients and their informal caregivers (i.e., unpaid family
members and friends). Specifically, associations were
explored between caregiving onset, sociodemographic
characteristics, care provision, caregiver health, and care
recipient status (i.e., in the community, institutionalized,
or deceased). By determining how different aspects of
dementia caregiving are associated with patterns of
entry, this study will help to extend our understanding of
caregiving onset and refine conceptual models of caregiving.

The onset of family care

Seminal early research8 suggested that the acquisition
of caregiving roles within aging families is based on a
hierarchical compensatory model; the closest and
most accessible person provides the bulk of assistance.
Thus, spouses would be the first choice as family caregivers, followed by adult children (usually daughters),
friends, and, if necessary, formal sources of support. The
literature has long emphasized the identification of a primary caregiver, although recent research has challenged
this notion.9
Other studies have examined how the transition from

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Recognition-care
(n = 367)

Symptom recognition occurred prior to

or at the same time of care provision.
These events were followed by diagnosis.

Care provision
(n = 280)

Care provision occurred prior to

symptom recognition and diagnosis.

Recognition-diagnosis
(n = 221)

Symptom recognition occurred, then diagnosis.

Both of these events were followed
by care provision.

Diagnosis dependent
(n = 187)

Diagnosis occurred prior to or at the same

time symptom recognition and the
provision of care occurred.

Figure 1. Sequences of onset.

noncaregiver to caregiver (or from providing no assistance at one point to providing help with at least one
activity of daily living at a later interval) affects stress
and negative mental health. The transition to caregiving
appears to exert a more negative emotional impact on
daughters than wives and caregiving husbands than noncaregiving husbands.6,10 However, when comparing new
caregivers to veteran caregivers who provided assistance for six months or more, several studies found little
difference in stress or negative mental health outcomes.11,12 For many new caregivers, elderly relatives
acute health needs precipitated the onset of care (e.g., a
stroke) and caused distress initially, followed by a sense
of stabilization over time.
Additional analyses of entry into caregiving are
derived from retrospective approaches. Some studies
have found that family members can readily indicate
when actual provision of care began, but have difficulty
recognizing when they thought of themselves as caregiver.13,14 A longitudinal study of dementia caregiving
used three baseline measures to assess the beginning of
intensive family care3: (1) symptom recognition, or time
since the caregiver realized that the elderly relatives
98

functioning deviated significantly from normal; (2)

duration of care, or the length of time caregivers reported
helping the elderly relative when he or she could no
longer do things for himself or herself; and (3) the length
of time elapsed since the relative first saw a doctor for
his or her memory problems. Considerable variability
occurred in the sequencing of these events, suggesting
the dynamic nature of caregiving onset. Other work
found that most respondents (over 50 percent) dated the
start of caregiving prior to the onset of a care recipients
impairment,15 implying that many caregivers defined the
start of their roles when care recipients were still fairly
independent, or perhaps confounded caregiving with
ordinary exchanges within families.

Research focus
The acquisition of the caregiving role is complex, and
different patterns of entry are likely to have various
implications for caregivers and their care receivers. Prior
research suggests that family members tend to adapt to
the caregiving role following an acute-care episode.11,12
However, in a progressive degenerative illness such as
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Alzheimers disease, the onset process may be more

variable. For some, the onset of care could begin with a
crisis (the relative wanders and is lost), whereas for others entry into the caregiving role occurs gradually, perhaps indiscernibly.
In order to ascertain the complexity of the entry
process in dementia caregiving, multiple indices of onset
must be used such as when a professional diagnosis was
obtained, when care provision began, and when the family member first recognized something wrong with the
relative.3,16 Using these three indices, we developed
typologies to determine the various pathways to caregiving entry. The sequencing of these three events could
lead to several distinct typologies, and the goal of the
present study is to describe differences in background
characteristics, caregiver identification (i.e., primary
or secondary), care provision, caregiver subjective
health, and care recipient living status among these various entry patterns. By exploring the underlying process
of caregiving onset, the present study will extend prior
research in several ways: we will ascertain why and
how certain family members assume primary care
responsibilities, and we will also determine how these
various patterns of entry are related to caregiver wellbeing and care recipient living status (two important
outcomes of interest in caregiving research). Such
information can help community-based respite providers
promote more effective and earlier use of services for
caregiving families.17,18

Methods
Data collection
Data were collected from listed contacts of patients
who visited the University of Kentucky Alzheimers
Disease Research Clinic since 1989 (UK-ADRC). Prior
to a clinical assessment, the names and contact information of up to two caregivers for each patient were identified. Patient contacts could include family members,
friends, or other individuals deemed important to the
care of patients at home. As of April 2001, the UKADRC maintained a database of 2,743 contacts.
The Community Care Survey (CCS), a brief survey
collecting data on background characteristics of the caregiver, care recipient living status, caregiver subjective
well-being, caregiving onset, and range of care provided
was mailed to patient contacts in May 2001. The CCS was
limited to one two-sided page, and follow-up queries were
mailed in June 2001 to ensure a good response rate.
Information on care recipient background characteristics
(i.e., type of diagnosis, date of diagnosis, age, gender, education) was available from the UK-ADRC.

Sample
Of the 2,743 surveys mailed, 1,055 were returned
completed. Of the 1,055 respondents, 59 were individuals who were not listed on the original UK-ADRC contact list (i.e., often additional family members who
assumed responsibility for the patient). There were several reasons surveys were not returned: the contact information maintained by the UK-ADRC was out of date
and a correct mailing address could not be located (n =
603), the contact or patient was deceased (n = 54), or the
survey was sent to an address but not returned (n =
1,090). Limited information was available from those
who received a survey but did not return it. The only
consistent data collected for all contacts during an initial
visit to the UK-ADRC were relationship to the patient
and gender. Chi-square analyses found that contacts who
did not return a survey were more likely to be men (40.6
percent versus 31.5 percent; p < 0.05) and less likely to
be a spouse of the patient (30.4 percent versus 35.1 percent; p < 0.05).
The CCS included participants who institutionalized a
care recipient or cared for a loved one who died, and
these individuals were included in subsequent analyses.
A significant segment of the literature tends to ignore the
ramifications of caregiving following a loved ones institutionalization or death. However, feelings of emotional
distress, depressed mood, and guilt related to care responsibilities tend to persist after these events.3,5,7,19
Because the implications of the caregiving career are
manifest long after a loved one dies or is institutionalized, the inclusion of these respondents was deemed relevant to the objectives of this study.
Table 1 presents background information for the sample. As indicated, almost 90 percent of respondents cared
for a loved one suffering from a diagnosed form of
dementia (n = 945; 89.6 percent). The majority of
patients not receiving a formal diagnosis of dementia
were classified by the UK-ADRC as having mild cognitive impairment.20 For comparison purposes, individuals who cared for nondiagnosed loved ones were
included. A covariate representing formal diagnosis of
dementia was incorporated in subsequent analyses.

Caregiving onset
Three indicators measured onset of caregiving in the
CCS. Symptom recognition was determined by asking
caregivers, How long ago did you realize something
was wrong with your loved one? (M = 64.57 months;
SD = 37.97). The second indicator, duration of care, was
measured by asking respondents, How long ago did you
first have to start helping (her/him) do things that

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Table 1. Background and descriptive data for the sample (N = 1055)

Variable

Mean (SD)

Percent

Caregiver background characteristics

gender (female)

722

68.4

race (Caucasian)

1011

95.8

marital status (married/living with partner)

790

74.9

work status (working full-time job)

374

35.5

relationship to care recipient (spouse or partner)

376

35.6

age (median)

59.84 (13.30)

education (1 = did not complete junior high; 8 = graduate degree)

5.21 (1.99)

annual income (1 = less than $5,000; 10 = $80,000 or over)

7.65 (2.14)

Caregiver well-being (self-rated: 1= poor; 4 = excellent)

2.98 (0.75)

Care recipient background characteristics

gender (female)

695

65.9

diagnosed with dementia

945

89.6

age

77.92 (8.91)

education (years)

12.47 (3.54)

Care provision
ADLa assistance (range 1 6)

2.03 (2.32)

IADLb assistance (range 1 6)

4.27 (2.14)

Transition length (months)

36.46 (28.26)

Time since onset (months)

34.76 (23.94)

Care recipient status in the community

516

48.9

Primary caregiver identification

639

60.6

ADL = activities of daily living; b IADL = instrumental activities of daily living.

(she/he) was no longer able to do for (herself/himself)?

(M = 49.96 months; SD = 37.97). Diagnosis was collected from UK-ADRC records and represented the first
time a loved one saw a doctor at the University of
Kentucky Memory Clinic for an in-depth assessment
and diagnosis (M = 44.02 months; SD = 37.97).
In the most prominent sequence of onset, caregivers
100

recognized symptoms before or at the same time help

was provided. Symptom recognition and the provision of
family care were mobilized prior to a diagnosis. These
caregivers were referred to as the recognition-care onset
group (n = 367). In the second most prevalent sequence, the
provision of help occurred prior to symptom recognition or
actual diagnosis. In this care provision group (n = 280),
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respondents already appeared well entrenched in their

roles once the recognition or confirmation of cognitive
impairment occurred.
For 221 caregivers, symptom recognition occurred
prior to the provision of care and diagnosis. These participants were referred to as the recognition-diagnosis
group. Individuals in the recognition-diagnosis group
turned to a medical professional for diagnosis and further advice after the recognition of symptoms. Following
a formal diagnosis, the caregiver began to provide more
intensive help. In the final onset sequence, caregivers
sought diagnosis prior to or at the same time that symptom recognition and/or the provision of help occurred.
This group was the diagnosis-dependent group (n =
187). For some caregivers, the onset of dementia symptoms is abrupt and requires the consultation of a physician. More commonly, family members ignore or deny
preliminary signs of cognitive decline but respond by
seeking professional help when a critical event occurs
e.g., disruptive behaviors or activities of daily living
(ADLs) impairments. After the diagnosis is made, the
caregiver assumes primary care responsibilities.
Figure 1 illustrates caregiving onset groups and their
associated sequences of symptom recognition, diagnosis, and duration of care.

Measures
In addition to background characteristics, the CCS
collected information on other aspects of the caregiving
situation, including caregivers subjective health, care
provision, and care recipient status. Table 1 presents
descriptive information on these variables for the sample.
Caregiver subjective health. One item was included
that asked caregivers: In general, would you describe
your physical health as? Response categories included
(4) excellent, (3) good, (2) fair, and (1) poor.
Since the length of the CCS was limited to ensure a good
response rate, more extensive measures of caregiver
emotional and psychological distress were not possible.
However, as past research has indicated, the one-item
subjective rating is a potent predictor of important health
outcomes in various populations.21
Care provision. Six yes/no items determined whether
the caregiver ever provided ADLs assistance (e.g., help
eating/drinking, dressing/undressing, bathing/showering, using the toilet/changing diapers or pads, getting in
and out of bed, getting around the house). In addition, six
yes/no items measured whether caregivers assisted with
instrumental activities of daily living (IADLs) such as
taking medications, cooking/preparing food, housekeeping/cleaning, doing laundry, transportation, managing
finances. ADL/IADL tasks were summed, respectively,

to represent the range of assistance provided to loved

ones.
Transition length. The time that elapsed between
duration of care, symptom recognition, and diagnosis for
each respondent was included in subsequent analyses.
Time since onset. The time that elapsed from the most
recent measure of caregiving onset (i.e., duration of care,
symptom recognition, or diagnosis) to the time of the
survey was included for each caregiver.
Care recipient status. A dummy variable was created
to capture care recipients living status (i.e., the relative
remained in the community, was placed in a nursing
home, or died) at the time of the CCS survey.
Primary caregiver identification. A single yes/no
item identified whether the participant was ever a primary or secondary caregiver for the loved one: Were/are
you the person who spent/spends the most time helping
your loved one?

Analysis
The analysis determined whether caregiver and care
recipient characteristics, ADL/IADL provision, caregiver
subjective health, transition length, time since onset,
care recipient status, and primary caregiver identification were associated with membership in the four caregiving onset sequences. A multinomial logistic regression
was used to explore those variables that were significantly associated with caregiving onset. A multinomial
logistic regression is used to predict a multiple discrete
outcome based on a set of predictor variables that are
continuous, dichotomous, discrete, or all three.22 Because this analysis included independent variables that
are both continuous and discrete as well as a dependent
variable that has four discrete and conceptually distinct
levels (recognition-care, diagnosis dependent, recognition-diagnosis, care provision), a multinomial logistic
regression was an appropriate approach for the analysis.
Several steps were taken to limit collinearity among
potential predictor variables. First, each variable was
analyzed alone as a single predictor of caregiving onset;
if the variable was significant at the p < 0.05 level, it was
retained in subsequent analyses. Then, bivariate correlations were conducted among those covariates that were
significant predictors. If a covariate was correlated at the
r >= 0.70, p < 0.05 level with one or more selected
covariates (r >= 0.70 is a rule of thumb when determining two variables are collinear23), then a decision was
made whether to keep that covariate in the model.

Results
The results of the multinomial logistic regression are

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Table 2. Characteristics of caregiver onset

Variable

SE

Wald

Exp (B)

Caregiver annual income

0.12

0.06

3.93

1.12

0.05

Time since onset

0.01

0.00

3.90

1.01

0.05

ADLa dependency

-0.01

0.05

0.04

0.99

0.83

Care recipient is male

-0.39

0.24

2.54

0.68

0.11

Caregiver is not married

0.14

0.29

0.21

1.14

0.65

Care recipient lives in the community

1.28

0.29

19.89

3.61

0.00

Care recipient is institutionalized

0.57

0.36

2.58

1.77

0.11

Caregiver is secondary

0.10

0.28

0.12

1.10

0.73

Caregiver annual income

0.05

0.05

0.96

1.05

0.33

Time since onset

0.01

0.00

7.75

1.01

0.01

ADLa dependency

-0.03

0.05

0.38

0.97

0.54

Care recipient is male

-0.54

0.23

5.50

0.92

0.02

Caregiver is not married

-0.10

0.28

0.14

1.55

0.71

Care recipient lives in the community

1.29

0.27

22.93

2.14

0.00

Care recipient is institutionalized

0.99

0.32

9.56

1.43

0.00

Caregiver is secondary

-0.08

0.28

0.09

0.92

0.77

Time since onset

-0.01

0.01

0.02

1.00

0.88

ADLa dependency

-0.01

0.05

0.00

1.00

0.99

Care recipient is male

-0.63

0.24

6.90

0.53

0.01

Caregiver is not married

0.25

0.28

0.80

1.29

0.37

Care recipient lives in the community

1.22

0.28

18.42

3.37

0.00

Care recipient is institutionalized

0.88

0.33

6.91

2.40

0.01

Caregiver is secondary

0.60

0.26

5.56

2.68

0.02

Recognition-diagnosis

Recognition-care

Care provision

ADL = activities of daily living. Diagnosis dependent is the reference category.

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presented in Table 2, with the diagnosis-dependent

sequence as the reference group. The model accounted
for a small amount of variance in the caregiving onset
variable (Cox Snell pseudo R2 = 0.10). Caregivers in the
recognition-diagnosis group reported a lengthier time
since onset (B = 0.01, p < 0.05) and greater income (B =
0.12, p < 0.05). Caregivers in the recognition-diagnosis
group were also more likely to care for loved ones who
lived in the community (B = 1.28, p < 0.001).
Participants in the recognition-care sequence reported
greater time since onset (B = 0.01, p < 0.01). Moreover,
individuals in the recognition-care sequence were more
likely to be secondary caregivers (B = 0.60, p < 0.05) and
less likely to care for men (B = -0.54, p < 0.05).
Individuals in the recognition-care group were also more
likely to care for loved ones who lived in the community
(B = 1.29, p < 0.001) or in a nursing home (B = 0.99, p <
0.01). Individuals in the care provision sequence were
less likely to care for men (B = -0.63, p < 0.05) and more
likely to care for loved ones in the community (B = 1.22,
p < 0.001) or in a nursing home (B = 0.88, p < 0.01).

Discussion
The findings emphasize the complexity and heterogeneity of caregiving onset. While many variables were
not associated reliably with caregiving onset (e.g.,
ADL/IADL provision, caregiver subjective health), care
recipient status in particular was strongly associated
with membership in various entry patterns. For example,
a strong empirical association existed between membership in the recognition-diagnosis, recognition-care, and
care provision groups and an increased likelihood of caring for loved ones in the community. When compared to
diagnosis-dependent caregivers, individuals in these
groups appeared to experience a more gradual entry into
responsibilities (i.e., diagnosis did not occur until symptoms were first acknowledged or care was provided).
The results suggest a more complex view than other
hypotheses that imply the longer the caregiving role, the
more likely a caregiver will terminate care responsibilities due to care recipient illness or caregiver distress
(e.g., wear-and-tear hypothesis24). How long a caregiver remains in his or her role is not as important as
determining how caregivers actually acquire their roles
during the onset of dementia care. Respondents who
gradually progressed into caregiving were more likely to
care for loved ones in the community, possibly because
the management styles and coping responses of these
individuals were well established before some crisis
related to a loved ones dementia occurred.
While the results illustrate the potential link between
gradual acclimation to caregiving roles and provision

of assistance in the community, membership in the diagnosis-dependent group was variably associated with care
recipients institutionalization and death. It is possible
that in instances where the onset of care is heralded by a
physicians diagnosis, a healthcare crisis occurred (wandering, the relative fell, etc.), suggesting a more rapid
decline in functional abilities leading to earlier death of
the care recipient. Further, for family members who must
step in and assume responsibility immediately, care
demands may become rapidly overwhelming, and there
is a need to find formal medical assistance to address
complex care needs. In such cases, institutionalization
may serve as a necessary alternative. The reliance on
professional help initially could have also served as the
catalyst to search for external sources of assistance outside the family. For example, the physician may have
recommended nursing home placement; as research on
the institutionalization decision has noted, physicians
often provide family caregivers with such advice.25
Length of time since onset in the recognition-diagnosis and recognition-care groups was slightly greater than
in the diagnosis-dependent group. It is likely that soon
after diagnosis, caregivers in the diagnosis-dependent
group became more aware of symptoms, while individuals in the recognition-diagnosis and recognition-care
groups may have identified symptoms in their loved
ones for some time until an actual professional diagnosis
was obtained or care was provided. Care recipients who
were men were more likely to be in the diagnosis-dependent group. It is possible that the memory disruptions
and problems associated with dementia in men may have
been more severe (e.g., physical aggression), resulting in
an earlier visit to a medical professional. Whats more,
men may have been less likely to accept help from other
family members for daily tasks, and a doctors diagnosis
was necessary to establish that there was a problem warranting family care. Those who were primary caregivers
were more likely to be in the diagnosis-dependent group
than individuals in the recognition-care sequence. Those
who are primary caregivers may be more likely to seek
out a diagnosis immediately and retain professional
assistance when compared to secondary caregivers who
are not as proximal to the care situation. Finally, caregivers with greater annual income were more likely to be
in the recognition-diagnosis group. Caregivers with
fewer financial resources may not have had the resources
available (e.g., in-home help) to avoid seeking out physician assistance early in a relatives dementia progression.
There are several limitations to this study. While the
sample is large for an analysis of dementia caregiving, it is
predominately Caucasian and well educated. More diversity is needed in analyses of caregiving to generalize
results to the empirical population. Similarly, caregivers

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in the CCS were recruited from the UK-ADRC. Selfselection bias may have occurred in the sample since individuals and their family members visiting the UK-ADRC
may not be representative of dementia caregivers in the
community. Although the present study enjoyed a good
response rate, nonresponses may have biased the empirical findings. More extensive measures of caregiver wellbeing and care recipient functional status (e.g., behavior
problems) may have increased the robustness of this
studys findings. Finally, a prospective longitudinal analysis that (1) allowed for more direct study of the causal
influence of caregiving onset on outcomes, and (2)
addressed potential recall errors in dates of onset would
have added to the empirical findings.
The results of this study contribute to our overall
understanding of caregiving onset and the potential
implications of this transition. In contrast to earlier models, where a longer duration of care was hypothesized to
result in poor outcomes, the present analysis supports a
burgeoning number of studies that attempt to delineate
the complex nature of transitions that transpire during
care provision.5,7 Specifically, how individuals acquire
their role and the sequencing of various onset events may
influence the subsequent construction and experiences
of the caregiving career. Other transitions that may
occur, such as nursing home placement of a chronically
disabled relative, warrant similar attention (e.g., a focus
on the processes underlying transitions, examining the
long-term effects of these events). Research in these
areas will advance the state of the art and determine how
the informal long-term care system develops and adapts
during the course of chronic illness. Moreover, increased
sensitivity to onset and other transitions in the caregiving
career will help practitioners develop more refined
approaches to intervening and alleviating distress and
negative outcomes among dementia caregivers and their
loved ones.

Acknowledgments
These analyses were supported by a grant from the National
Institute on Aging (#AG05144, Alzheimers Disease Research
Center). The authors would like to thank Dr. William Markesbery and
Dr. Wes Ashford for their diagnostic expertise and Amanda Rush,
Niki London, Tiffany Magness, and Stephanie Mullins for their assistance with data collection and the management of this study.

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American Journal of Alzheimers Disease and Other Dementias

Volume 18, Number 2, March/April 2003
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