Douglas W. Scharre, MD
The behavioral and psychologic symptoms of dementia (BPSD), include psychosis (ie, delusions and hallucinations), aggression, agitation, irritability, anxiety, depression, apathy, mood lability, disinhibition, intrusiveness, impulsivity, restless motor disturbances, and sleep disturbances, among others. 1-3 BPSD presentations can vary with underlying disease and stage of the disorder. Most people with dementia develop multiple behavioral symptoms compounding their impact on individuals and those who interact with them. BPSD should be assessed clinically by patient observation and by asking questions of the patient and informants who know the patient well. Survey tools can be used to help identify the presence or absence of BPSD.
There are currently 45 million individuals worldwide living with dementia, 4 90% or more will have BPSD during their disease course. 5 The frequency and severity of BPSD correlate strongly with poorer prognosis, a more rapid decline in cognition and ability to perform activities of daily living (ADLs), increased morbidity (eg, falls, sedation, cardiovascular and neurologic symptoms), increased mortality, reduced quality of life, increased caregiver support, higher costs of care, and increased institutionalization. 5-11 BPSD also correlate with greater caregiver burden, distress, depression, increased caregiver risk of harm, and reduced caregiver quality of life. 5-11 General guidelines for behavioral management are provided in Box 1.
Box 1. General Guidelines for Behavioral and Psychiatric Symptoms of Dementia
Nonpharmacologic approaches (Box 2) are very useful in BPSD management, however interventions vary widely and studies are few. 1,12-14
Box 2. Behavioral Modification Approaches
Strategies directed towards individuals
Strategies directed towards caregivers
Strategies directed towards the environment
Strategies Directed Toward Individuals
Common useful strategies include music and art therapy and personalized activities (eg, reminiscence, socialization, engaging in meaningful activities, and exercise). 13-14 Conversing one-to-one with a person about their preferred topics of interest may quiet verbally disruptive behavior. 15
Sensory interventions directed towards the individual with dementia include therapeutic touch, massage, and multi-sensory stimulation (eg, music, occupational, and physical therapies) with mixed evidence of short-term reduction of anxiety, depression, agitation, apathy, and psychosis. 12,13,16 Pet therapy may improve socialization. 17 Problem-solving therapy (ie, teaching problem-solving skills and finding solutions to current problems) and reminiscence therapy have some benefit for reducing depression and anxiety. 12,13
How you approach the individual with dementia can also significantly reduce PBSD. Approach slowly so as not to startle them or make them feel uncomfortable or anxious. A harsh, commanding, or loud tone of voice can make some individuals feel threatened, domineered, or frightened, and they may react in kind. When language skills fade, focus on the individual’s emotional responses for communication cues as much as or more than their words. Always smile. Even an agitated individual may calm a little when everyone is smiling. Use an open, nonthreatening posture and avoid looking fearful or angry, crossing arms, or taking defensive stances. To help calm the individual, maintain eye contact, nod your head yes, wave hello, shrug your shoulders and exaggerate nonverbal movements to communicate to them that you are not a threat. Speak using simple words in short phrases and talk slowly for maximum comprehension. Ask questions requiring only brief answers. Break tasks into smaller steps to avoid frustration.
When an individual is looking confused or anxious, reassure them that everything is going to be all right. Giving compliments may defuse potentially volatile situations: tell them how well they look, that they have done a great job, that you like them, and thank them for all their help. Although their concerns may or may not have any basis in reality, arguing seldom reduces unwanted behaviors and often exacerbates anger. You do not have to correct misstatements and can, instead, empathize with the person’s predicament and acknowledge their concerns. Reassure them that you are on their side.
As dementia progresses and patients are less and less able to make wise decisions on their own, resist the habit of always telling them what to do (eg, go to the toilet, take your pills, or come here now). Individuals may refuse because they do not like to feel bossed. Instead, allow them to think that it is their choice or their idea. Emphasizing that you are doing the same activity reduces their feeling of being singled out (eg,“I’m going to the bathroom. Do you want to go first?”) If the individual is about to do something beyond their abilities, such as cooking or driving, distraction or redirection with something they usually enjoy is useful. Asking, “Can you help me over here?” is often successful in redirecting a person away from another activity or a dangerous situation. This question can also be used to assist in getting someone to a desired location like the bathroom or to bed.
Keeping very routine day-to-day activities in familiar environments will help to avoid anxiousness or agitation. Changes in environment often cause disorientation, confusion, and suspiciousness. Increasing daytime pleasurable activities, exercise, and walking helps provide brain stimulation, decreases daytime naps, improves nighttime sleep, and reduces wandering, agitation, and depression. Daycare, home aides, and respite care can also provide needed supervision and stimulation.
Strategies Directed Toward Caregivers
Strategies directed toward caregivers are often education based, designed to change approaches toward and interactions with the individual with dementia to better deal with behaviors. This can be effective in decreasing caregiver distress and improving caregiver mental health (see Dementia Caregiver Needs in this issue). 12,18 Caregivers also need information regarding support groups, family counseling, and social services. Support groups can provide increased caregiver confidence. 19
Caregiver interventions for paid caregivers include training in person-centered care (PCC) and communication skills. 12 PCC prioritizes the well-being of the individual, engages the individual in meaningful activities, improves the quality of the relationships between the person and providers, and ensures the caregivers and providers are familiar with the prior life/interests of the individual. PCC had significant effects on decreasing behavioral symptoms and psychotropic medication use of dementia residents in long-term care. 20,21
There are many approaches to providing PCC. Dementia Care Mapping (DCM), Treatment Routes for Exploring Agitation (TREA), Tailored Activity Programs (TAP), and Describe-Investigate-Create-Evaluate (DICE) are methods to observe and collect information about individuals, which can then be used to train caregivers, plan care, and monitor and address patient-specific behaviors with activities or other means. These programs have shown efficacy in reducing patient agitation, BPSD, and falls, improving affect and quality of life among residents, and diminishing caregiver distress and burnout among staff. 1,12,22-27
Strategies Directed Toward the Environment
Environmental approaches include identifying and addressing factors in the environment that may contribute to BPSD or compromise safety if a behavioral symptom occurs. 1 These may include addressing overstimulation (eg, excess noise, people, or clutter), understimulation (eg, lack of anything interesting to look at), safety (eg, presence of sharp objects or opportunities for elopement), and lack of established routines. A limited number of studies examining the effects of environmental interventions have reported improvements in behavioral symptoms, overall wellbeing, activity engagement, elopement behavior, and acceptance of care. 1
Sensory deprivation can be avoided by ensuring prescription glasses and hearing aids are used to maximal effectiveness so individuals can see and hear as well as possible. Ensure there is plenty of light to aid vision during the day and use night-lights for potential nighttime arousals.
Avoid overstimulating the patient by taking them out of or altering their usual environment. If the patient is going to a family gathering with lots of people, have them sit in a quiet room where they can be visited by 1 or 2 people at a time for socialization and inclusion.
Utilization behaviors refer to a propensity of a person with dementia to perform a task when triggered to do so by a visual cue. They will do this task whether or not the time, place, or setting is appropriate (eg, open a front door even though there is a blizzard outside, get dressed in the middle of the night, or turn on the stove with nothing in the pot). Caregivers should limit visual stimuli and keep out of sight items that routinely cause certain reactions or behaviors that could be unsafe. Doorknobs and mirrors can be covered up and stove burner knobs removed on the principle of “out of sight, out of mind.”
Providing an open, safe, contained environment in which patients may pace or walk often helps decrease agitated behaviors. For those with hyperoral behaviors who use their mouths to explore both food and non-food items, the environment should be as free as possible of small items they may try to ingest. Increasing light in the evenings can reduce confusion related to diminished visual and sensory cues (ie, sundowning). Nightlights may help lessen behaviors from individuals with frequent nocturnal awakenings.
There is a paucity of double-blind, placebo-controlled trials that have evaluated medications for the treatment of behavioral disturbances in people with dementia. 2-3,10,12,28-31 As such, the suggested preferred treatment recommendations in the Table are based on the author’s review of the literature and personal experience. Because there are no Food and Drug Administration (FDA)-approved agents for BPSD, all are off-label uses. Pharmacotherapy should be reserved for behaviors that severely disturb the individual or their caregivers, markedly disrupt the individual’s daily life activities, or cause concern for the safety of the individual or others. If more than 1 BPSD is causing significant impact, using rational polypharmacy is very appropriate to control behaviors that may be affected by derangements in serotonin, acetylcholine, dopamine, or other neural circuits and chemicals.