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Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S. Long-term Care Placement of Dementia Patients and Caregiver Health and Well-being. JAMA. 2004;292(8):961–967. doi:10.1001/jama.292.8.961
Author Affiliations: Department of Psychiatry (Dr Schulz), Department of Epidemiology (Dr Belle and Ms Zhang), and University Center for Social and Urban Research (Dr Schulz and Ms McGinnis), University of Pittsburgh, Pittsburgh, Pa; Department of Psychiatry and Behavioral Sciences and Center on Aging, University of Miami, Miami, Fla (Dr Czaja); and Division of Gerontology/Geriatric Medicine, University of Alabama at Birmingham (Dr Stevens).
Context Placing a relative with dementia into a long-term care facility is common
among caregivers. Placement transition and factors that affect caregiver health
and well-being after placement of the patient are not well described.
Objective To assess the impact of placing a relative with dementia in a long-term
care facility on caregivers' health and well-being.
Design, Setting, and Participants Prospective study from 1996 to 2000 of the placement transition in a
sample of 1222 caregiver-patient dyads recruited from 6 US sites. A total
of 180 patients were placed in a long-term care facility during the 18-month
follow-up period. Data collected before and after placement were analyzed
to identify factors associated with placement, the nature of contact between
caregivers and their institutionalized relatives after placement, and the
relation of both of these factors to health outcomes among dementia caregivers.
Main Outcome Measures Caregiver depression (symptoms on the Center for Epidemiological Studies-Depression
[CES-D] scale; range, 0-60) and anxiety (State Trait Inventory; range, 10-40)
and use of prescription medications for depression and anxiety.
Results Caregivers who institutionalized their relative reported depressive
symptoms and anxiety to be as high as they were while in-home caregivers.
Overall CES-D scores for depression did not change from before to after placement
(median [IQR], 15.0 [8-24.5] and 15.0 [7.7-28]; P =
.64). Overall anxiety scores on the State Trait Inventory also did not change
significantly (median [IQR], 22.0 [19-27] before vs 21.1 [18-27] after; P = .21). These effects were most pronounced among caregivers
who were married to the patient (P = .02 for depression),
visited more frequently (P = .01 for depression and P<.001 for anxiety), and were less satisfied with the
help they received from others (P = .003 for depression
and P<.001 for anxiety). The use of antidepressants
did not change significantly before (21.1%) to after (17.9%) placement (P = .16). The use of anxiolytics before to after placement
increased from 14.6% to 19% (P = .02), and nearly
half of caregivers (48.3%) were at risk for clinical depression following
placement of their relative.
Conclusions The transition to institutional care is particularly difficult for spouses,
almost half of whom visit the patient daily and continue to provide help with
physical care during their visits. Clinical interventions that better prepare
the caregiver for a placement transition and treat their depression and anxiety
following placement may be of great benefit to these individuals.
Research on family caregiving has focused primarily on documenting the
relationship between the demands of providing in-home care and caregiver outcomes
such as burden, distress, and psychiatric and physical morbidity.1,2 Much less attention has been paid to
transitions into or out of the caregiving role. Since nearly half of all persons
aged 65 years or older admitted to nursing homes have dementia, assessing
the effects of this transition on the caregiver is an important public health
Several recent studies have focused on caregiver exit transitions by
assessing the effects on the caregiver of death or institutionalization of
the care recipient. Caregiver bereavement studies have shown that caregivers
demonstrate remarkable resilience and recovery in response to the death of
a loved one.4,5 However, the benefits
to the caregiver of institutionalizing his/her relative appear to be less
in part because the caregiving role is not wholly relinquished after institutionalization.
Cross-sectional studies of caregivers of institutionalized relatives8,13-15 as
well as longitudinal studies of the institutionalization transition9,16 dispute the myth that family members
abandon their elderly relatives admitted to a long-term care facility. The
majority of caregivers visit their relative on a regular basis17,18 and
perform tasks similar to those carried out when the relative was living at
home, such as feeding, grooming, managing money, shopping, and providing transportation.
In addition, caregivers take on new tasks such as interacting with administration
and staff of the facility and becoming an advocate for the residents. However,
none of these studies link the frequency and type of contact between caregivers
and their relative with caregiver health outcomes; nor do they provide a clear
picture of the longitudinal changes in the health of the caregiver.
Numerous investigators also have studied predictors of institutionalization
of patients with dementia,19-24 but
these studies have not assessed the relation between risk factors for placement
and caregiver outcomes following placement. Knowing why a patient was placed
may provide important information about the effects of placement on the caregiver.
For example, the functional status of the patient and the level of burden
and depression experienced by caregivers are consistently associated with
placement, but little is known about how these factors affect the postplacement
experience of the caregiver.22,23
These 3 lines of research—antecedents of institutionalization,
the frequency and types of contact among caregivers and institutionalized
relatives, and the psychiatric and physical health status of caregivers following
placement—have evolved in relative isolation. We undertook this study
to report on the transition experience and postplacement health effects in
a large cohort of family caregivers of persons with dementia. This is the
first study, to our knowledge, to attempt a comprehensive analysis of the
transition experience by assessing antecedent conditions that lead to placement,
the nature of contact between caregivers and their institutionalized relatives
after placement, and the relation of both of these factors to health outcomes
among dementia caregivers following placement. Findings from this study should
be useful in determining when and what types of support caregivers need in
negotiating the placement transition.
This study includes caregivers enrolled in the Resources for Enhancing
Alzheimer's Caregiver Health (REACH) study,25 a
multisite trial that tested the feasibility of numerous psychosocial interventions
and their impact on the health and well-being of family caregivers living
with persons with dementia.
REACH is described in detail elsewhere.26 Briefly,
data for 1222 caregiver and care recipient dyads were collected from 1996
to 2000 at 6 sites in the United States: Boston, Mass; Birmingham, Ala; Memphis,
Tenn; Miami, Fla; Philadelphia, Pa; and Palo Alto, Calif. To assess the caregiving
experience in different racial/ethnic groups, the study population included
self-identified black or African American, Hispanic (Cuban American, Mexican
American), and white family caregivers of patients with diagnosed Alzheimer
disease who were moderately to severely impaired. The research protocol was
approved by the institutional review boards of all participating sites and
the coordinating center, and written informed consent was obtained from all
caregivers enrolled in the study.
Standardized survey instruments and several open-ended questions were
administered by trained and certified interviewers before the study participants
were randomly assigned to either a treatment group or control group. Caregivers
assigned to a treatment condition received a social/behavioral intervention
while those in the control group received either usual care or minimal support
(ie, periodic telephone calls to see how they were doing). At all 6 sites,
the majority of treatment was delivered within 6 months of randomization.
Caregivers were assessed at baseline, and then 6, 12, and 18 months following
randomization. Caregivers randomly assigned to active treatment reported less
burden after treatment than did caregivers in the control condition, but group
assignment had no statistically significant effect on any of the outcomes
examined in this article.25
The following demographic variables are described for both caregiver
and care recipient at baseline: age, race/ethnicity, sex, education, income,
and relationship between caregiver and care recipient (spouse or not). Care
recipient cognitive function was assessed using the Mini-Mental State Examination
(MMSE), with scores ranging from 0 to 30, a higher score indicating higher
cognitive functioning.27 Physical impairment
was measured using the standardized functional assessment instruments for
activities of daily living (ADL) (bathing, dressing, eating, getting out of
a bed or chair, grooming, and using the toilet)28 and
instrumental activities of daily living (IADL) (using the telephone, shopping,
preparing meals, housekeeping, doing laundry, traveling by car or bus, administering
medications, and handling finances)29 reported
by the caregiver. Care recipient physical health was measured by asking the
caregiver: "Other than problems with memory or confusion, how would you rate
the physical health of (care recipient)?" Possible responses were poor (1),
fair (2), good (3), very good (4), and excellent (5).
Caregiver burden was assessed using the Revised Memory and Behavior
Problems Checklist,30 which is used to characterize
memory and behavior problems in patients with dementia and the caregiver reported
burden associated with these behaviors (range, 0-96, with higher values indicating
greater burden). Positive aspects of caregiving were assessed using a scale
of 9 items, adapted from items used in the Caregiver Health Effects Study.31,32 Respondents were asked to indicate
their level of agreement or disagreement with statements describing "good
things" about caregiving, including making them feel "more useful," "good
about themselves," "needed," "appreciated," and "important." Responses were
coded using a 5-point agree/disagree scale (range, 9-45, with high values
indicating more positive aspects of caregiving). Neither the burden nor positive
aspects of caregiving measures were collected after placement of the care
recipient. Caregiver comorbidities were assessed by asking whether they had
arthritis, high blood pressure, heart condition, chronic lung disease, diabetes,
cancer, or stroke (yes/no; range, 0-7).
Depressive symptoms were assessed before and after placement using the
Center for Epidemiological Studies-Depression (CES-D) scale (range, 0-60,
with higher values indicating more depressive symptoms).33 Information
on caregivers' use of prescription medications for depression and anxiety
was collected by transcribing information from medication containers provided
by the caregivers. Caregiver anxiety was assessed using the state portion
of the State Trait Inventory,34 which consists
of 10 statements regarding the level of experienced anxiety to which respondents
indicated their level of agreement: not at all, somewhat, moderately, or very
much. Responses were summed creating a scale ranging from 10 to 40, 10 indicating
the least anxiety and 40 indicating the most anxiety.
Satisfaction with help from family and friends was assessed with the
following question: "Overall, how satisfied have you been in the last month
with the help you have received from friends, neighbors, or family members?"
Possible responses were not at all (0), a little (1), moderately (2), and
very (3). Satisfaction with social and leisure activities was measured with
the 7-item Leisure Time Satisfaction scale asking respondents to indicate
how satisfied they were with the amount of time they had been able to spend
in activities they enjoy, such as attending church, taking part in hobbies,
going out for meals, and doing fun things with other people. Possible responses
were not at all (0), a little (1), a lot (2); scores ranged from 0 to 14,
with low scores indicating low satisfaction.35
After placing their relative in a long-term care facility, caregivers
were asked about how often they visited, whether they helped with physical
care, how satisfied they were with the quality of care, and the social and
physical environments of the long-term care facility. They were also asked
whether they were using their own finances to pay for the stay.
Because the assignment of caregivers to a treatment group or to a control
group was not significantly related to the outcomes examined in this article,
including time to institutionalization, we combined caregivers in the intervention
and control groups into a single group. Of the 1222 dyads enrolled in the
study, a total of 180 care recipients were institutionalized.
Using all dyads enrolled in REACH for which covariate data and dates
of institutionalization were available, we first identified factors associated
with institutionalization using stratified (by site) proportional hazards
models.36 Univariate analyses assessed whether
any of the following variables were statistically significantly associated
with time to institutionalization: relationship between caregiver and care
recipient; caregiver and care recipient age, sex, and education; caregiver
race/ethnicity; burden and positive aspects of caregiving; depression, use
of medication for depression, anxiety, and use of medication for anxiety;
self-rated health score, satisfaction with help from others, satisfaction
with social activities, assignment to active treatment or control condition;
and care recipient MMSE, ADL, IADL, and physical health. All variables were
eligible for inclusion in the multivariable model obtained using stepwise
selection. Results of the models are reported as hazard ratios (HRs) with
95% confidence intervals (CIs) and P values.
Caregiver outcomes prior to placement were compared with those following
placement using assessment data closest to the placement date. Characteristics
compared included depression, antidepressant use, anxiety, anxiolytic use,
satisfaction with social activities, and satisfaction with help from others.
Furthermore, preplacement depression and anxiety were compared with their
respective values 1 year following placement. Statistical significance of
changes over time in continuous variables were compared using Wilcoxon matched-pairs
signed rank tests; dichotomous variables were compared using McNemar χ2 tests; and categorical variables with more than 2 categories were
compared using the Bowker test for symmetry.37 Caregiver
satisfaction with the quality of the long-term care facility at first interview
following placement is also described.
After confirming that assumptions were not violated, linear regression
was used to identify factors associated with the first postplacement CES-D
score. Simple regression models included caregiver age, relationship to care
recipient, race/ethnicity, education, family income, number of comorbidities,
visiting frequency, receiving help with physical care, time spent helping
with physical care, paying for care, satisfaction with quality of care, assignment
to treatment or control group, time since placement, and care recipient ADL
status. All variables were eligible for inclusion in a multivariable model
using stepwise regression. Preplacement CES-D scores were controlled for in
the multivariable model because CES-D scores before and after placement were
associated. The same procedure was used to identify factors associated with
the first postplacement anxiety score, with the exception that preplacement
anxiety score was controlled for instead of the preplacement CES-D score.
Changes in depression and anxiety before and after placement for spouse
compared with nonspouse caregivers were compared using the 2-sample Wilcoxon
signed rank test.
For all statistical tests, P<.05 was considered
to be statistically significant. Statistical analyses were conducted using
SAS version 8.2 (SAS Institute Inc, Cary, NC).
Demographic characteristics of the entire sample of 1222 caregivers
and care recipients have been previously reported.25 Briefly,
the median age of caregivers at baseline was 63 years (range, 22-95 years),
and the majority were female (81.4%). The sample included 684 white (56%),
295 black (24.2%), and 232 Hispanic (19%) in-home caregivers, who were primarily
spouses (48%) or children (44%) of the care recipients. The remaining 8% were
siblings, grandchildren, nieces, and nephews. Care recipients had a diagnosis
of Alzheimer disease, with a median age of 80 years (range, 44-102 years),
and slightly more than half were female (55.6%). They were moderately to severely
impaired with median MMSE scores of 13 (range, 0-29) (out of 30), a median
of 3 (range, 0-6) (out of 6) ADL impairments, and 8 (range, 1-8) (out of 8)
From multivariable proportional hazard models, we found that black and
Hispanic caregivers were less likely to place their relative in a facility
than were white caregivers. Caregivers reporting greater burden were more
likely to institutionalize their relative, and caregivers reporting greater
positive aspects of caregiving were less likely to do so. Care recipients
scoring in the mild category on the MMSE were less likely to be institutionalized
than those in the severe category (Table
1). Assignment to treatment or control condition was not significantly
related to long-term care placement.
The sample of 180 caregivers who institutionalized their relative in
the course of the study were a median age of 66 years (interquartile range
[IQR], 63-75 years), and 121 (67.2%) were white. More than half of caregivers
were spouses of the care recipient (94; 52.2%), and the large majority of
the nonspouse caregivers were children of the care recipient (81; 81.4%).
The care recipients had median MMSE scores of 11 (IQR, 6-17) and 4 (IQR, 2-5)
ADL impairments (Table 2). The
majority of care recipients were placed in skilled nursing or intermediate-care
facilities (133; 73.9%), followed by assisted living facilities (26; 14.4%),
personal care homes (12; 6.7%), rehabilitation facilities (3; 1.7%), and other
facilities (6; 3.3%).
At the first interview following placement, 46 (49.5%) spouse and 22
(25.6%) nonspouse caregivers reported visiting the care recipient at least
once a day, and nearly all (167; 93.3%) reported visiting at least once a
week. A total of 96 (53.6%) indicated that they provided help with the physical
care of the patient. Nearly half of responding caregivers expressed the highest
category of satisfaction for each of the aspects of the institution they were
asked about: 78 (44.1%) caregivers were very satisfied with the quality of
care provided by the facility, 76 (43.2%) were very satisfied with the social
environment, and 84 (47.2%) were very satisfied with the physical environment.
Almost half of spouse caregivers (43; 47.8%) were paying for care using their
own finances compared with only 10 (11.6%) nonspouse caregivers (Table 3).
The median time between placement and the last preplacement assessment
was 16.6 weeks (IQR, 10.6-23.1 weeks), and the median time between placement
and the first postplacement assessment was 12.2 weeks (IQR, 5.4-16.9 weeks).
CES-D scores, the percentage of caregivers taking antidepressants, and anxiety
scores did not change significantly from before to after placement. Nearly
half of the caregivers (87; 48.3% following placement) had CES-D scores of
16 or higher, indicating that they were at risk for clinical depression. Spouses,
compared with nonspouses, were significantly more depressed before placement
and more depressed and anxious after placement (Table 4). The changes did not differ significantly by caregiver
relationship to care recipient. The percentage of caregivers taking anxiolytics
increased from before to after placement, with 10 caregivers starting use
and 2 quitting (Table 4).
Satisfaction with social activities increased from before to after placement
(P<.001), and the percentage of caregivers very
satisfied with help received from others increased following placement (P = .005) (Table 4).
Adjusting for preplacement CES-D, we found that spouses, those who visited
at least daily, and those less satisfied with help from others had higher
postplacement CES-D scores (Table 5).
Adjusting for preplacement anxiety, those who visited daily and those who
were less satisfied with help from others had higher postplacement anxiety
scores (Table 5). Neither group
assignment (active treatment vs control) nor time since placement was significantly
associated with either CES-D or anxiety at the first measurement following
To assess long-term changes in depression and anxiety, we compared CES-D
and anxiety scores from before placement to those approximately 1 year following
placement for the 41 caregivers who had CES-D values from 44 to 60 weeks following
placement. We found no statistically significant change in CES-D scores from
preplacement levels. However, there was a statistically significant decrease
in anxiety scores (median [IQR], 23.6 [19-27] vs 19.8 [17-23]; P<.001), which was not significantly related to the use of anxiolytics.
After adjusting for preplacement CES-D and anxiety scores, respectively, we
found no statistically significant predictors of long-term changes in depression
or anxiety in 2 separate multivariable regression models.
Based on a large cohort of caregivers of persons with dementia followed
up for 18 months, this article provides a comprehensive assessment of predictors
of institutional placement among dementia patients, the type and frequency
of contact between family caregiver and patient following placement, changes
in caregiver depression and anxiety before to after placement, and factors
predicting postplacement adjustment among caregivers. Like others,23 we found that race/ethnicity, caregiver burden, and
global cognitive function of the patient are important predictors of institutionalization.
In addition, we uncovered a new independent protective factor that delays
institutionalization. Caregivers who reported that providing help to their
relative made them feel more useful, needed, appreciated, and important were
less likely to institutionalize the patient. This finding highlights the fact
that there are both benefits and burdens associated with caregiving and they
exert independent effects on the placement decision. We also found that spouses
compared with nonspouses differed in the level of distress they reported prior
to and after placement. Spouses reported higher levels of depression both
before and after placement and more anxiety after placement than their nonspouse
In a previous article based on a cohort of caregivers from the same
parent study who experienced the death of their relative with dementia, we
showed that the effects of the relative's death are relatively benign, with
caregivers reporting significant decreases in depression before to after the
death.5 The findings reported here stand in
sharp contrast to the bereavement effects. Caregivers who institutionalized
their relative reported depressive symptoms and anxiety to be as high as they
were while the patient was being cared for at home and they reported increased
use of anxiolytics from before to after placement. Being married to the patient,
visiting more frequently, and being more dissatisfied with help received from
others were associated with higher depression scores following placement.
More visiting and dissatisfaction with support from others was also linked
to higher anxiety scores. These data suggest that the transition to institutional
care is particularly difficult for spouses, almost half of whom visit the
patient daily and continue to provide help with physical care during their
Our findings also indicate that anxiety, but not depression, declined
over time and that caregivers became more satisfied with their social activities
and the support they received from others. The latter finding may be the result
of the contrast between unmet needs while they were in-home caregivers and
the unmet needs following placement.
Multiple factors may contribute to the continued high level of depressive
symptoms among caregivers who place their relative in a long-term care facility.
Caregivers face new practical realities such as changes in the family's financial
situation, frequent trips to the long-term care facility, reduced control
over the care provided their relative, and taking on new responsibilities
such as coordinating and monitoring care. In addition, patient functional
and cognitive declines are common following placement, causing caregivers
to question the placement decision. Maintaining contact with the care recipient
through frequent visits makes salient the continued decline of the patient.
Finally, personal and cultural expectations regarding the acceptability of
institutional care can create conflict for the caregiver. On a personal level,
caregivers may feel they have broken a promise to the patient or failed to
live up to parental/spousal obligations.
These findings have important clinical implications. Caregivers are
at risk for adverse health outcomes not only while providing care at home,
but also after the patient is institutionalized. Our findings indicate that
spouses, caregivers who remain actively involved with the care recipient,
caregivers who have high levels of depression, and those who lack adequate
support from others should receive interventions, such as preparation for
and guidance through the placement transition, medical treatment for anxiety
and depression following their relative's placement, and the recruitment of
family and friends to support the caregiver.