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Dr. Gitlin receives funding from the Alzheimer’s Association (NPSASA-10-174265). Dr. Freedman has reviewed this editorial and found no evidence of influence from this relationship.
The Alzheimer’s Association had no role in the preparation, review, or approval of this editorial.
From the Department of Health Systems and Outcomes, School of Nursing, Department of Psychiatry and Division of Geriatrics and Gerontology, School of Medicine, and Center for Innovative Care in Aging, Johns Hopkins University, Baltimore.
Address correspondence to Dr. Gitlin (email@example.com).
These interventions should be central to the clinical management of behavioral symptoms.
Dementia has devastating social, economic, and emotional consequences not only for patients but also for their family caregivers (1, 2). It is a critical public health concern for which the global burden by the year 2050 is expected to exceed 115.4 million people worldwide and 16 million in the United States (1, 2). The near future is poised to yield new diagnostic criteria, assessments for early detection, and treatments postponing disease progression, resulting in an even greater number of people who will be diagnosed and living longer with the disease than current estimates indicate.
Most patients with dementia are cared for at home by family members living with or near them. In the United States, this represents 15 million informal family members who provide protracted care to people with dementia extending over the course of the disease until the end of life (1, 3). One of the most demanding and difficult aspects of care is managing multiple troublesome behaviors associated with the disease. Behaviors such as wandering, repetitive questioning, shadowing, aggressiveness, apathy, sleep disorders, hoarding, and resistance to help with daily activities are often more challenging for families to prevent, reduce, or manage than the cognitive decline of the disease (4, 5).
These behavioral symptoms are nearly universal and occur at any disease stage, with multiple behaviors often occurring simultaneously (4). For patients, the consequences are profound; if untreated, behavioral symptoms are associated with more rapid disease progression, greater disability, higher health care utilization and costs, poor quality of life, and nursing home placement. Equally disturbing are the effects on families. Behaviors are associated with increased caregiver upset, burden, depression, time in daily oversight, and care costs (6).
Given the numbers of patients and family members affected by dementia, the pervasiveness of behavioral symptoms, and their poor prognosis, behavioral management should be a clinical priority. Nevertheless, there is no systematic, coordinated, uniform, or agreed-upon approach to clinically managing behavioral symptoms. Typically, when behaviors are presented in a medical setting, an antipsychotic prescription—specifically the off-label use of an atypical antipsychotic—is provided. Although use of antipsychotics for dementia has declined, there is still an overreliance on these medications and other pharmacologic treatments (7). Their use occurs despite known risks (e.g., cerebrovascular events, mortality) outweighing the benefits and a Food and Drug Administration boxed warning. Importantly, no pharmacologic treatments exist for the behaviors that families identify as the most troublesome (5).
Clinical guidelines from numerous medical organizations for managing behavioral symptoms recommend nonpharmacologic approaches, including caregiver supportive interventions, as first-line treatment (8). Interventions for caregivers may include skills training, education, activity planning, environmental redesign, and social and emotional support, tested either singly or in combination. However, nonpharmacologic approaches are not widely implemented, largely because of lack of provider knowledge concerning their efficacy and limitations imposed by reimbursement mechanisms.
Given the crisis in dementia care (9), the study by Brodaty and Arasaratnam (10) in this issue of the Journal is significant and welcome news. A robust corpus of research demonstrating the efficacy of psychosocial and environmental interventions directed toward family caregivers has emerged over the past two decades. Yet, this body of strong evidence has been largely ignored by the medical community. Furthermore, it has been unclear whether interventions targeting family caregivers yield patient benefits. Brodaty and Arasaratnam conducted a meta-analysis of 23 high-quality caregiver intervention studies to evaluate their combined effects on behavioral symptoms and caregiver distress. Of these, 16 (69.6%) met criteria for a randomized clinical trial and seven, although using random allocation, were considered pseudorandomized because of unclear explication of methods. Collectively, these studies involved 3,279 family caregivers of community dwelling individuals with dementia.
Significant treatment effects were demonstrated for reductions in behavioral symptoms (effect size=0.34, 95% confidence interval [CI]=0.20–0.48; z=4.87, p<0.01) and caregiver negative reactions (effect size=0.15, 95% CI=0.04–0.26; z=2.76, p=0.006). Although effect sizes were small to medium, improvements compared more than favorably with pharmacologic trials and are clinically meaningful. Even small changes in behaviors can help families keep a relative with dementia living at home longer with improved quality of life. Notably, these gains were achieved with no adverse events or known risks. Characteristics of the most successful interventions included tailoring to specific behaviors, needs, and contexts, providing an average of nine to 12 sessions, and assessing needs from which to link intervention strategies. Of three studies (13%) reporting neutral outcomes, other positive outcomes for caregivers were demonstrated; one of these studies included behavioral management training in both the intervention and comparison arms, with both groups improving. Only one study, a cognitive-behavioral intervention, reported negative outcomes, with both the intervention and comparison groups declining similarly over time.
Two key conclusions can be drawn from this study. First, the meta-analysis provides the strongest evidence to date that caregiver interventions have a twofold advantage: they reduce distress in caregivers, and they reduce behavioral symptoms in individuals with dementia. This quantitative synthesis of high-quality studies provides confirmation that helping families is an important vehicle for helping patients. As such, these interventions should be central to the clinical management of behavioral symptoms. The primary challenge remains how to widely implement and financially sustain delivery of these interventions to address the urgent need of families.
The second key point is that in order to optimize clinical potency, relevance of interventions, and the implementation potential of interventions, much more research is required. For example, cost analyses for almost all of the included interventions are woefully missing, yet an economic perspective could guide implementation considerations. Additionally, as Brodaty and Arasaratnam indicate, “fine-grained questions” concerning dosing, start and stop rules, and which interventions and their components are most effective for improving which behavioral symptoms need greater clarification. It is difficult to discern whether any one intervention is more effective than another and which intervention works best for which service setting, specific behavior, disease stage, or caregiver and patient profile. How is a clinician to choose which intervention to invest in and learn to use? At this stage of the evidence and until clarity, decision rules, and more precision are achieved, it may be preferable to consider all of these interventions as part of a tool kit for addressing behavioral symptoms. Clinicians may want to pick and choose the interventions showcased in the meta-analysis based on the specific family needs they encounter and their context of care delivery, such as the available professional and financial resources for delivering any one intervention.
This article is timely in view of the 2012 World Health Organization report urging countries to develop dementia plans that balance searching for a cure with advancing evidence-based quality care (2). Current health care reform initiatives in the United States to reduce nursing home placements and overreliance on psychotropic medications and the 2011 National Alzheimer’s Project Act, suggest cautious optimism that policy change may move caregiver interventions into real-world settings.
In an editorial concerning the main outcomes of the National Institutes of Health multisite Resources for Enhancing Alzheimer’s Caregiver Health initiative, one of the 23 trials included in the meta-analysis, Covinsky and Johnston (11) concluded that “if these interventions were drugs, it is hard to believe that they would not be on the fast track to approval. The magnitude of benefit and quality of evidence supporting these interventions considerably exceed those of currently approved pharmacologic therapies (for dementia).” This statement, 6 years later, applies. It raises the question, If not now, then when will these proven programs be made available to families who continue to receive suboptimal care or no treatment at all for behavioral symptoms? Brodaty and Arasaratnam’s meta-analysis provides strong evidence that helping families is good news for dementia care.
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