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Correspondence: Address correspondence to Judith G. Gonyea, PhD, Boston University, School of Social Work, 264 Bay State Road, Boston, MA 02215. E-mail: jgonyea{at}bu.edu
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Key Words: Alzheimer's disease • Burden • Caregiver interventions • Neuropsychiatric symptoms
Awareness of the many negative consequences that neuropsychiatric symptoms have on the well-being of individuals with dementia and their caregivers has prompted intervention studies designed to reduce neuropsychiatric symptoms and the burden they produce for caregivers. Most of the early interventions designed for Alzheimer's caregivers were broad in nature and scope, typically providing general information about the disease process, stress-management skills, some access to community resources, and, perhaps most notably, peer support. However, the results of studies evaluating the effectiveness of such interventions generally indicated only modest, if any, beneficial effects on specific outcomes (Brodaty, Green, & Koschera, 2003; Schulz et al., 2002). A number of methodological issues, including the lack of focused interventions, the absence of random assignment to treatment condition or control groups, and the use of nonequivalent treatment populations across studies, make it difficult to draw conclusions about treatment effectiveness.
The Resources for Enhancing Alzheimer's Caregiver Health or REACH I and II initiatives of the National Institutes of Health have been important catalysts in advancing caregiver intervention research. Although different intervention strategies were tested at the six REACH sites (Boston, Birmingham, Memphis, Miami, Palo Alto, and Philadelphia), they shared a common goal of seeking to change specific caregiving stressors, caregivers' appraisals, or caregivers' responses to the stressors (Schulz et al., 2003). Together, the findings from REACH's multisite studies offer evidence that targeted, multicomponent interventions may be more effective than broader psychoeducational interventions, and thus they are contributing to a new generation of caregiver interventions. Of particular relevance is the Palo Alto site study assessing the benefits of Coping With Caregiving (CWC), a psychoeducational, skill-building group approach for reducing caregivers' psychological distress (Gallagher-Thompson et al., 2003). Participants in the CWC intervention, which was based on principles of cognitive behavioral therapy, reported significant declines in depressive symptoms and an increase use of adaptive coping strategies. However, the intensity of the CWC intervention—10 weekly session followed by 8 monthly sessions—may exceed the resources of some agencies and caregivers and suggests a need to also test shorter term interventions.
In order to examine the potential utility of a brief, targeted, multicomponent group intervention for Alzheimer's caregivers, we conducted Project CARE, a randomized controlled trial designed to examine the effectiveness of a 5-week behavioral intervention aimed to reduce caregiver distress related to neuropsychiatric symptoms of patients with Alzheimer's disease, as well as general caregiver burden, and to decrease neuropsychiatric symptoms among individuals with dementia. The behavioral intervention utilizes three primary behavioral components including behavioral management training, pleasant events training, and relaxation training. We chose to test the effectiveness of this intervention through the use of a group format, as it allowed us the opportunity to offer peer support and reach a greater number of caregivers.
The current study focuses on outcomes after completion of the intervention (6 weeks after baseline assessment) and compares the effectiveness of the intervention group with a standard psychoeducational control group. Specifically, we tested three hypotheses:
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Research Design and Timeline
We conducted a randomized, controlled clinical trial with preintervention and postintervention assessments. First, after reviewing the potential benefits and risks associated with study participation with the eligible caregivers and gathering their informed consent, a trained interviewer met with the caregivers to administer the baseline interview. We then assigned participants by block randomization to one of the two conditions: the behavioral intervention group (experimental group) or the psychoeducational group (control group). Group interventions began within 1 week of the baseline assessment. Post-treatment assessment was conducted within 1 week after the completion of the intervention.
Intervention Descriptions
Both the intervention and control groups were run over the course of 5 weeks, with each group meeting once a week for 90 minutes. Only caregivers participated in the groups; care recipients did not. Groups were highly structured and typically were conducted with 5 to 10 members; over the course of the study, we ran a total of 10 groups. When necessary, we provided caregivers with transportation vouchers to assist with the cost of attending groups. In most cases, when caregivers required respite care, we were also able to make these arrangements if the individual with Alzheimer's disease could come to the group site.
The therapists conducting the interventions participated in 16 to 20 hours of training in the intervention protocols, which included both didactic and experiential training. To monitor treatment fidelity throughout the study, the principal investigator consulted with the therapists on a regular basis to review the group session experience and assess group progress. The content of the intervention and control groups is described in more detail in the paragraphs that follow and in Table 1. Caregivers in both conditions received equal contact time with group leaders.
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The control group was similarly structured, but its content consisted of only general information on aging and Alzheimer's disease (e.g., its causes, course, and treatment), home safety tips, techniques for improved communication, and support.
Primary Outcome Measures
We assessed care recipients' neuropsychiatric symptoms by using the Neuropsychiatric Inventory (Cummings et al., 1994). This clinician-administered interview was designed to assess the frequency and severity of neuropsychiatric symptoms of individuals with Alzheimer's disease. Ten symptoms are assessed: delusions, hallucinations, agitation or aggression, depression or dysphoria, anxiety, elation or euphoria, apathy or indifference, disinhibition, irritability or lability, and aberrant motor behavior. Symptom presence or absence is assessed first. If a symptom is present, its frequency is rated on a scale of 1 (occasionally, less than once per week) to 4 (very frequently, once or more per day). Scores are summed to provide a total symptom-frequency rating. Symptom severity is rated on a scale of 1 (mild) to 3 (marked). Frequency and severity scores are multiplied to provide a total score, with higher scores reflecting greater neuropsychiatric impairment. The Neuropsychiatric Inventory also provides a measure of caregiver distress as it relates to neuropsychiatric symptoms. Caregivers are asked to provide a rating from 0 (not at all distressed) to 5 (very distressed) indicating how distressed they are by each of the 10 problems areas assessed. Scores are then summed to provide a total distress score ranging from 0 to 50, with higher scores reflecting greater distress.
We measured caregiver burden by using an abridged version of the Zarit Burden Interview (ZBI; O'Rourke & Tuokko, 2003). This 12-item interview assesses those aspects of caregiving most frequently described as burdensome, including patient needs, patient–caregiver interactions, caregiver well-being, and social functioning. Individual items are rated on a 5-point scale ranging from 0 (never) to 4 (nearly always). The Zarit Burden Interview yields a total score ranging from 0 to 48, with higher scores reflecting greater burden.
Analysis
Our first analytic step was to examine the baseline characteristics of the caregivers on demographic and outcome variables by using chi-square and analysis of variance tests, as appropriate, to identify possible differences between the intervention group and the control group participants at baseline. Second, we assessed intervention effects on the outcome measures by using an analysis of covariance. In these analyses, the outcome variable was the post-treatment 6-week score; the independent variable was the intervention condition; and the covariate was the baseline or pretreatment value of the outcome variable. We conducted all analyses by using SPSS Version 13. We chose a two-tailed value of p <.05 as the cutoff for statistical significance.
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Results |
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Our final sample of 80 caregivers included mostly spouses (59%) or adult children (32%) of individuals with Alzheimer's disease. The majority of caregivers were female (67%) and Caucasian (94%), and their average age was 64.4 years (SD = 13.8 years). The vast majority of caregivers (87%) lived with the individual for whom they were caring, and the average length of caregiving was 3.5 years (SD = 2.5 years). The care recipients had a mean age of 77 years (SD = 6.9 years) and typically had moderate levels of functional impairment as measured by the Lawton and Brody Activities of Daily Living Questionnaire (M = 10.9, SD = 5.1). There were no statistically significant differences at baseline between the 40 participants in the intervention group and the 40 participants in the control group on any of the caregiver or care recipient demographic and outcome measures (p >.05).
Table 2 presents pretreatment and post-treatment means and standard deviations for the intervention group and the control group on the three outcome measures: caregiver distress related to neuropsychiatric symptoms, overall caregiver burden, and patient neuropsychiatric symptom severity.
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Discussion |
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Findings from the present study suggest that targeted caregiver interventions may be beneficial for specific purposes. Most previous caregiver interventions have been broad in nature, and such interventions appear to have modest, if any, beneficial effects. Our intervention was highly specific in nature and aimed to teach caregivers behavioral techniques for managing neuropsychiatric symptoms in the home environment. Our findings suggest that this intervention was successful in this regard.
Although we hypothesized that caregivers in the intervention group would show significant reductions in their overall levels of caregiver burden, contrary to our expectation, the overall level of burden was not significantly reduced in either group. There are a few potential reasons for the lack of effect; perhaps most notably, caregiver burden is a general construct that is impacted by many factors, including financial, emotional, and social stressors. A targeted intervention such as ours may not be sufficient to effectively impact enough of these factors to influence overall burden. Another possible reason for the lack of a reduction in overall burden is that the experience of burden may be related to internal caregiver attributes that are not easily amenable to change. Similar to the theory of a biological set point for the experience of positive and negative affect (Rowe, 2001), individual caregivers may possess a set point for experiencing feelings of burden. If this is the case, then burden may be only partially determined by situational factors. Given the numerous contributors to burden and the complexity of caregiver burden as a measurable construct, we may expect that targeted interventions would be relatively unsuccessful in changing the level of overall burden perceived by caregivers.
This study makes two important contributions to the field. First, the study adds to the growing body of literature that suggests that targeted interventions based on the principles of behavioral therapy are effective in helping families cope with stresses of caregiving. Second, it provides evidence of the effectiveness of a brief intervention; this reduced time commitment may be of particular importance to already busy caregivers of individuals with Alzheimer's disease, many of whom have limited respite care options.
There are, however, several limitations to our research. We relied on caregivers' self-report of neuropsychiatric symptom severity; therefore, future research should be undertaken to validate our findings with an objective measure. It was also not possible to blind all interviewers to the caregiver's treatment condition at the postintervention assessment. Furthermore, although we routinely asked for copies of caregivers' homework, thereby having a sense that the majority of the caregivers were using the therapeutic techniques in their home environments, not all caregivers chose to submit their work. Finally, it is important to note the low rate of participation by ethnically and racially diverse individuals, which limits the generalizability of our findings to diverse populations. Minority groups are unstudied in Alzheimer's disease research, and the importance of tailoring treatments to an ethnically diverse audience is increasingly being recognized (Aranda & Knight, 1997; Austrom et al., 2004).
Although our findings suggest that targeted group-based multicomponent interventions may be effective for use with caregivers of individuals with Alzheimer's disease, we recognize that caregivers are often challenged to find the time and resources needed to attend such groups outside the home. Future studies should attempt to develop and test targeted interventions that use new technologies to capitalize on the advantages they offer. For example, Internet-based interventions may have great potential to reach homebound caregivers or caregivers who live in areas where resources are not available (Eisdorfer et al., 2003; Klemm & Wheeler, 2005). Burgio, Stevens, Guy, Roth, and Haley (2003) reported on an intervention designed to reduce neuropsychiatric symptoms and related caregiver distress that utilized a one-time group workshop in combination with follow-up home-based training. Adapting some or all of our behavioral intervention by using such technology, perhaps to include a home-based component, may also represent an area for future investigation.
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Footnotes |
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1 School of Social Work, Boston University, MA.
2 Department of Psychology, Edith Norse Rogers Veterans Memorial Hospital, Bedford, MA.
3 Alzheimer's Disease Center, Rush University, Chicago, IL.
Decision Editor: Nancy Morrow-Howell, PhD
Received for publication November 15, 2005. Accepted for publication March 10, 2006.
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