Nonpharmacologic Management of Behavioral Symptoms in Dementia
Laura N. Gitlin, PhD; Helen C. Kales, MD; Constantine G. Lyketsos, MD, MHS
ABSTRACT
Behavioral symptoms such as repetitive speech, wandering, and sleep disturbances are a core clinical feature of Alzheimer disease and related dementias. If untreated, these behaviors can accelerate disease progression, worsen functional decline and quality of life, cause significant caregiver distress, and result in earlier nursing home placement. Systematic screening for behavioral symptoms in dementia is an important prevention strategy that facilitates early treatment of behavioral symptoms by identifying underlying causes and tailoring a treatment plan. First-line nonpharmacologic treatments are recommended because available pharmacologic treatments are only modestly effective, have notable risks, and do not effectively treat some of the behaviors that family members and caregivers find most distressing. Examples of nonpharmacologic treatments include provision of caregiver education and support, training in problem solving, and targeted therapy directed at the underlying causes for specific behaviors (eg, implementing nighttime routines to address sleep disturbances). Based on an actual case, we characterize common behavioral symptoms and describe a strategy for selecting evidence-based nonpharmacologic dementia treatments. Nonpharmacologic management of behavioral symptoms in dementia can significantly improve quality of life and patient-caregiver satisfaction.
THE PATIENT'S STORY
Mr P is a 93-year-old bachelor who has lived in the United States since emigrating from Mexico at age 8. He began to have memory problems 13 years ago such as forgetting why he walked into a room or whether he had taken his medications. Mr P sought treatment in 2004 and scored 29 of 30 points on the Mini-Mental State Examination (MMSE; normal cognition score >24). His memory impairment, coupled with results from brain computed tomography showing white matter changes and bilateral and frontotemporal atrophy, led to diagnosis of mild cognitive impairment due to brain vascular disease.
By 2010, Mr P's score had declined by 8 points (MMSE, 21/30) and his course of illness was considered consistent with mild progressive dementia. Mr P lives with Mr C, a cousin who is also his primary caregiver. Mr P has no children and all other family lives in Mexico. His caregiver is employed full time, which requires that Mr P stay at home alone. Mr P relies on his caregiver to organize and administer his 13 medications and to perform instrumental activities such as shopping and cooking. He dresses and bathes independently.
Mr P maintained a positive mood as his disease progressed. He lacked insight into his memory problems. Neuropsychological testing revealed major impairments in executive function, verbal and spatial memory, word-finding ability, and recall. His other diagnoses included hypertension, type 2 diabetes mellitus, lower extremity peripheral neuropathy, and coronary artery disease.
Mr P's dementia progressed, he napped excessively during the day, experienced nighttime restlessness, and frequently awakened Mr C. Additionally, he withdrew from gardening and other previously enjoyed activities and reported feelings of insecurity and loneliness.
Concurrently, caregiving responsibilities increased for Mr C and he had limited outside support. He found Mr P's confusion and repetitive questioning difficult to endure and became sleep deprived because Mr P awakened him and was "hearing voices at night."
In 2011, paramedics brought Mr P to an emergency department after he became lost and subsequently fell. Immediately preceding this event, he was home alone and had a nosebleed. He became anxious and left the house to seek help. He was found by neighbors who phoned to alert Mr C. This caused Dr J, Mr P's physician, to question Mr P's decision-making capacity and ability to safely stay at home alone. A Care of the Aging Patient series editor interviewed Mr P, his caregiver, and his physician in 2011.
Perspectives
Mr P: (Asked about his health) . . . My heart? . . . I'm very well for my age . . . I think you have noticed I'm not hearing well . . . I'm mostly by myself. [My caregiver] goes to work during the daytime. I don't see him . . . I just get lonesome.
Mr P's caregiver: Well, it's not easy. I have to be very patient and sometimes I'm not patient enough. . . . What I don't like is [being awakened] during the night when he gets up and turns on the light in my room and he wants to know if I'm there.
Dr J: (Recalled) The patient declined in his cognitive abilities . . . In evenings, he was very restless . . . He wasn't sleeping and was turning on lights and talking loudly . . . The caregiver was concerned because he appeared to be talking to people.
Dementia-associated behaviors worsen quality of life for patients and their family caregivers.1- 2 Dementia is a pandemic that is projected to afflict more than 16 million patients in the United States by 2050.3 Most patients receive care at home from family throughout the disease course.4 As with many patients with dementia, Mr P's behavioral symptoms (Table 1) evolved as his disease progressed.
METHODS
We searched PubMed for English-language studies in peer-reviewed journals published from January 1992 to July 1, 2012, concerning nonpharmacologic behavioral management and focused primarily on community-dwelling dementia patients. Search terms included nonpharmacologic interventions and nonpharmacologic strategies; behavioral symptoms in dementia; and neuropsychiatric symptoms, treatment for neuropsychiatric behaviors; and behavioral and psychological symptoms of dementia. We also searched for recent published systematic reviews, meta-analyses, Cochrane reviews, and home- and community-based randomized trials of nonpharmacologic treatments from January 2001 to July 1, 2012, with behavioral symptoms as an outcome. Additionally, we searched PubMed and websites of medical organizations for published dementia care guidelines that included treatment for behaviors and reviewed the Physician Consortium for Performance Improvement 2011 Dementia Performance Measurement Set. Our data synthesis and recommendations were developed using existing evidence and our clinical experience. A summary of systematic reviews and meta-analyses and additional resource websites are provided online (eTable 1, eTable 2, and eResources).
Definition, Etiology, and Prevalence of Behavioral Symptoms
Behavioral symptoms are a heterogeneous group of noncognitive disturbances that occur in patients with dementia. These symptoms are frequently difficult to manage. In this article, behavioral symptoms refer to the psychiatric manifestations of dementia that occur in clusters (depression, psychosis, apathy [diminished motivation], agitation, aggression, delusions, hallucinations, sleep disturbances, and executive dysfunction) and other behaviors (repetitive vocalizations, shadowing, resistance to care, wandering, and argumentativeness) commonly observed in dementia.2
Behavioral symptoms are almost universally observed in dementia, regardless of the underlying etiology.2,5- 9 However, some causes of dementia are frequently associated with particular behaviors. Depression is most common in vascular dementia. Hallucinations are more frequent in disseminated Lewy body disease than in Alzheimer disease. Frontotemporal dementia is often characterized by executive control loss (evidenced by behaviors such as disinhibition, wandering, social inappropriateness, and apathy).10- 12
Behavioral symptoms occur at all disease stages. Depression is frequently observed in mild cognitive impairment and early-stage Alzheimer disease and may worsen with disease progression. Delusions, hallucinations, and aggression are more common in moderate to severe disease stages.2 Apathy, as occurred with Mr P, is among the most frequent and persistent behavioral symptoms across all dementia stages and is commonly reported by family members.2 Agitation, another chronic and persistent problem reported by families, involves emotional distress, excessive psychomotor activity, wandering, aggressive behaviors,9 irritability, disinhibition, and vocally disruptive behaviors.13- 14 Agitation occurs at all levels of dementia severity, but particularly in middle to later stages (MMSE <20).5,15- 17
Cognitive impairment alone does not explain the etiology of abnormal behaviors. Behavioral symptoms may be caused by brain damage. Also, as patients with dementia have heightened vulnerability to their environment, behavioral symptoms may result from the confluence of multiple, some potentially modifiable, interacting factors including internal (eg, pain, fear) and/or external (eg, overstimulating environment, complex caregiver communications) features.9
Caregivers must cope with multiple behaviors simultaneously (as with Mr P). Dementia-related behaviors tend to last long periods of time but may fluctuate in frequency and severity.
Consequences of Behavioral Symptoms
Behavioral symptoms generate more harmful consequences to patients and families than symptoms attributable to memory loss from cognitive decline.7,13,20- 21 Individuals with dementia, such as Mr P, typically have limited insight into their behaviors and how they impact caregivers. Caregivers for these individuals frequently have no training in how to manage these behaviors. Managing behavioral symptoms is associated with increases in health services utilization, direct care costs, and family time spent in daily oversight, as with Mr P and his caregiver.22- 23
Behavioral symptoms increase risk of engagement in dangerous activities, hasten disease progression, and may result in nursing home placement, restraint use, and psychiatric admissions.9,24- 28 Depression, delusions, agitation, hallucinations, and caregiver distress are also associated with nursing home placement.29- 30 Managing a patient's sleep disturbances, wandering, repetitive vocalizations, or other common behavioral symptoms (restlessness, anxiousness, overactivity, resisting or refusing care), are the most problematic and distressing aspects of care provision (as with Mr P).2,21,31- 32 Caregivers of patients with behavioral symptoms are more distressed and depressed than those not managing behaviors.
Nonpharmacologic Approaches to Managing Behavioral Symptoms
Pharmacological treatments typically involve off-label use of atypical antipsychotics. These medications result in modest to no improvement when compared with placebo.34- 36 Some of these drugs carry US Food and Drug Administration warnings and may cause adverse effects including increased morbidity (eg, falls) and mortality risk.37- 39 Nonpharmacologic strategies are important because existing drugs may not address the behavioral symptoms most problematic to caregivers (eg, resistance to care) or the potentially modifiable underlying causes of behaviors (eg, unmet needs).32
Nonpharmacologic approaches include targeted and generalized treatments (Table 1, Table 2). Nonpharmacologic approaches conceptualize behavioral symptoms as expressions of unmet needs (eg, repetitive vocalizations for auditory stimulation); inadvertently reinforced behavior in response to environmental triggers (eg, patient learns screaming attracts increased attention); and/or consequences of a mismatch between the environment and a patient's abilities to process and act upon cues, expectations, and demands.
Treatment goals of nonpharmacologic approaches include preventing, managing, reducing, or eliminating behavioral occurrences; reducing caregiver distress; and/or preventing adverse consequences (harm to caregiver or patient).
Numerous guidelines recommend nonpharmacologic approaches as the preferred first-line treatment, except in emergency situations when behaviors lead to imminent danger to the patient or caregiver.41- 47 Emerging evidence supports nonpharamacologic approaches as part of standard, comprehensive dementia care.
