Behavioral Approaches in Dementia Care

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.

Nonpharmacologic Approaches for BPSD

Nonpharmacologic approaches (Box 2) are very useful in BPSD management, however interventions vary widely and studies are few.^1,12-14

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.

Principles of Pharmacotherapy for Behaviors

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.

Significant safety concerns of antipsychotics in this population include parkinsonism, dystonia, tardive dyskinesia, acceleration of cognitive decline, prolongation of QTc interval on ECG, falls, deep vein thrombosis, stroke, and mortality.^3,28 These side effects prompted issuance of a black box warning by the FDA and similar warning in the EU, which caution against use of these agents in elder populations.³

Behavior Management Approaches

When using medications, follow all the recommendations in Box 1. Preferred pharmacologic treatments are listed in order of preference in the Table. The choice of agent requires the clinician to assess the potential risks and benefits for a specific individual and their type of dementia in light of their goals of care.

Psychosis

Preferred treatments for psychosis have low anticholinergic properties.^32-34 Some are available as intramuscular, liquid solution, or oral disintegrating tablet formulations that may be preferable in some circumstances. Atypical antipsychotics can be very effective, and with regular monitoring for effectiveness and side-effects, use should not be avoided because of potential side effects. Thioridazine and other typical antipsychotics, in contrast, are better avoided because their effective doses often cause undesirable side effects.

Affective Disturbances (Depression and Anxiety)

Selective serotonin reuptake inhibitors (SSRIs) are very effective for depression in dementia and have low anticholinergic properties in general, minimal effects on cognition, and typically few sedative properties.^35-37 The choice of SSRI is usually based on matching the side effect profile to the individual. Tertiary tricyclic antidepressants should be avoided because they have anticholinergic properties that can worsen cognition and cause dry mouth, sedation, orthostasis, and constipation.

SSRIs are also very good anxiolytic agents with an efficacy and tolerance profile that makes them the first choice in dementia for anxiety. Valproate works particularly well if anxiety is mixed with mood lability.³⁸ Studies of cholinesterase inhibitors have all shown these significantly reduce anxiety symptoms.^39-40 Beta-blockers need to be used with caution in those with diabetes, chronic obstructive pulmonary disease (COPD), asthma, hypotension, or bradycardia. Atypical antipsychotics may be helpful for anxiety symptoms but should be used as a last resort unless there are significant psychotic behaviors along with anxiety. Try to completely avoid benzodiazepines in people over age 65 with dementia, except as short-term sedation. Although benzodiazepines have anxiolytic properties, they have too many side effects to be given on a regular basis in this population and may also cause tolerance and dependency.

Apathy

In people with Alzheimer disease (AD), cholinesterase inhibitors significantly improve apathy.³⁹ There is increasing evidence that methylphenidate, modafinil, and perhaps other psychostimulants improve apathy in AD.⁴¹ Apathy has been treated successfully in a variety of other brain conditions with psychostimulants and dopaminergic agents (eg, amantadine, carbidopa/levodopa, bromocriptine, and bupropion).

Disinhibition, Intrusiveness, and Impulsivity

Anticonvulsants with proven mood stabilizing properties seem to help these symptoms very well.^42-43 Doses of valproate often do not have to be very high (250 mg to 1,000 mg/ day in 2-3 divided doses) to be effective for these symptoms in AD patients. Dextromethorphan/quinidine has been shown to help dementia-related pseudobulbar affect and AD-related agitation.⁴⁴ There is some data showing significant reductions in mood lability and disinhibition with cholinesterase inhibitors.⁴⁵ Olanzapine and perhaps other atypical antipsychotics may also be helpful for disinhibition.³² Try to avoid lithium in people with dementia who are over age 65 because it has a narrow therapeutic window and a high risk of causing adverse events.

Aberrant Motor Behaviors (Restlessness)

SSRIs are helpful in decreasing general restlessness, purposeless activities, and repetitive compulsive-like behaviors.^46-47 Valproate has been shown to reduce symptoms of restlessness, pacing, verbosity, and hyperkinesis (ie, inability to still or sit for any length of time).³⁸ Some of the cholinesterase inhibitors have shown significant reductions in aberrant motor behaviors in AD patients.^40,45

Sleep Disturbances

Trazodone, an antidepressant with sedative properties, is ideally suited for people with dementia and can be given long-term with few anticholinergic effects to cause memory loss.⁴⁸ Zolpidem also helps sleep disturbances associated with dementia and is well tolerated without the tolerance or withdrawal symptoms seen with benzodiazepines. Melatonin, in some studies, has been useful in helping with the disrupted circadian sleep-wake rhythm and the chronobiologic changes of aging seen in those with dementia.⁴⁹ When disrupted sleep occurs in combination with other behaviors that need treatment, consider using a more sedating agent for the behavior unrelated to sleep to treat both problems with 1 medication. Second-line treatments for sleep disturbances can include gabapentin, which is well tolerated and shown to be beneficial for sleep disturbances in people with AD.⁵⁰ Agents to avoid in those over age 65 with dementia because they may cause confusion include antihistamines (ie, over-the-counter sleeping aids), barbiturates, and long-acting hypnotics or benzodiazepines.

Aggression and Agitated Behaviors

Aggression is not in the Table because it usually results from 1 or more of the underlying behaviors listed. Environmental disruption can lead to reactive aggression by a person who perceives they are being bossed by others or told what to do. Psychosis, delusional beliefs, or suspicion often result in agitation. Anxiety or fear can lead to aggression. An excessively restless individual who needs to keep moving may strike out at anyone in their way. Intrusive or disinhibited patients can encroach on others to such an extent that it draws out a fight.

It is best to target treatment to an individual’s specific underlying causes of agitation. For example, in those with aggression caused by delusions and psychosis, atypical antipsychotics are preferred. If agitation is associated with restlessness or wanting-to-go behaviors, then antidepressants or possibly anticonvulsants should be considered. When disinhibition or intrusiveness is the cause of the aggression, try anticonvulsants before antidepressants. When anxiety, dysphoria, or depression seems to be the trigger for aggression, antidepressants are suggested first-line treatments. Modifying the environment usually works best for those with reactive agitation.