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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.
97
Recognition-care
(n = 367)
Care provision
(n = 280)
Recognition-diagnosis
(n = 221)
Diagnosis dependent
(n = 187)
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
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
American Journal of Alzheimers Disease and Other Dementias
Volume 18, Number 2, March/April 2003
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
99
Mean (SD)
Percent
722
68.4
race (Caucasian)
1011
95.8
790
74.9
374
35.5
376
35.6
age (median)
59.84 (13.30)
5.21 (1.99)
7.65 (2.14)
2.98 (0.75)
695
65.9
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)
4.27 (2.14)
36.46 (28.26)
34.76 (23.94)
516
48.9
639
60.6
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,
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
101
SE
Wald
Exp (B)
0.12
0.06
3.93
1.12
0.05
0.01
0.00
3.90
1.01
0.05
ADLa dependency
-0.01
0.05
0.04
0.99
0.83
-0.39
0.24
2.54
0.68
0.11
0.14
0.29
0.21
1.14
0.65
1.28
0.29
19.89
3.61
0.00
0.57
0.36
2.58
1.77
0.11
Caregiver is secondary
0.10
0.28
0.12
1.10
0.73
0.05
0.05
0.96
1.05
0.33
0.01
0.00
7.75
1.01
0.01
ADLa dependency
-0.03
0.05
0.38
0.97
0.54
-0.54
0.23
5.50
0.92
0.02
-0.10
0.28
0.14
1.55
0.71
1.29
0.27
22.93
2.14
0.00
0.99
0.32
9.56
1.43
0.00
Caregiver is secondary
-0.08
0.28
0.09
0.92
0.77
-0.01
0.01
0.02
1.00
0.88
ADLa dependency
-0.01
0.05
0.00
1.00
0.99
-0.63
0.24
6.90
0.53
0.01
0.25
0.28
0.80
1.29
0.37
1.22
0.28
18.42
3.37
0.00
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
102
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
103
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.
References
1. Montgomery RJV, Williams KN: Implications of differential
impacts of caregiving for future research on Alzheimers care. Aging
Ment Health. 2001; 5: S23-S35.
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