January/February 2015

Behavioral Expressions in Dementia Patients
By Mark D. Coggins, PharmD, CGP, FASCP
Today's Geriatric Medicine
Vol. 8 No. 1 P. 6

Dementia is characterized by a gradual and progressive decline in memory, thinking, and reasoning abilities. During the course of the disease, up to 90% of patients will exhibit behavioral and psychological symptoms of dementia (BPSD), which can include depression, apathy, disinhibition, delusions, hallucinations, aggression, irritability, agitation, anxiety, wandering, and sleep or appetite changes. BPSD are independently associated with poor outcomes, including patient and caregiver distress, increased hospitalizations, inappropriate medication use, and increased care costs.1

The challenges associated with BPSD account for 50% of nursing home admissions. In long term care facilities, 80% of dementia patients experience some degree of behavioral and psychological symptoms.2

Medication Overuse Concerns
While antipsychotics are often appropriate for psychotic disorders such as schizophrenia and for psychotic symptoms including delusions and hallucinations, the use of antipsychotics in dementia patients without true psychosis is questionable and poses significant risk, including sedation, extrapyramidal side effects, increased fall risk and hip fractures, and cardiovascular complications, including the risk of death. The use of other behavior medications such as benzodiazepines is also of concern as these are associated with falls, depression, and increased confusion.

Psychopharmacological medications should not be used to address BPSD without first assessing dementia patients for possible underlying medical, physical, functional, psychosocial, emotional, psychiatric, or environmental causes of the behavioral symptom. While these medications may be effective when used appropriately to address significant specific underlying medical and psychiatric causes or new or worsening behavioral symptoms, these medications may be ineffective and are likely to cause harm when given without a clinical indication, at too high a dose, or for too long after symptoms have resolved, and if the medications are not monitored. With the exception of emergency use for acute dangerous behaviors, these medications should be used only after personalized approaches have been attempted and found to be ineffective.3

Avoid Negative Labeling
The term "behavior problem" is frequently used to describe behaviors observed in dementia patients; however, the term can have negative implications in how these patients are viewed and treated. Negative labeling of dementia patients can contribute to the inappropriate use of behavior management medications. Individuals with dementia are often viewed as "dementia patients" and the symptoms associated with the disease often result in society viewing them as less than whole. Such views can lead to reduced care and services, focusing only on basic physical needs with little attention paid to the individual's life history, interests, and preferences; wants and needs; and what is meaningful in his or her daily life.

Negative labels or views of behavior symptoms describing a person as being disruptive, aggressive, or inappropriate often result in inappropriate labeling of the person as a "problem patient" or "behavior patient," which can increase the risk of overlooking acute illness, pain, or emotional, psychological, or physical needs that may trigger behavioral changes.4

Behavioral Expressions as Communication of Needs
Many dementia care experts recommend using the term "behavioral expressions" or expressions of unmet needs when describing behavioral symptoms exhibited by individuals with dementia. These patients are often unable to adequately understand explanations, follow directions, report symptoms and needs, and ask for help in a way most people may consider normal. The individual still expresses or communicates his or her basic needs and feelings but in different ways, including verbal, nonverbal, and behavioral expressions.4

Behavioral expressions rarely occur for no reason and should be assessed as an individual's attempt to communicate needs. For example, agitated behavioral expressions may arise from becoming overstimulated, environmental factors such as noise, inability to recognize surroundings or environment, the need to rest, pain, hunger, thirst, boredom, loneliness, unmet psychosocial needs, or an underlying medical condition.4

By evaluating behavioral expressions in terms of possible unmet needs, personalized approaches can be better implemented, inappropriate antipsychotic and other behavior medications are reduced, and quality of life is likely to be enhanced as more effective approaches, treatment, and communications with the dementia patient become more likely. Person-based, caregiver-based, and environmental-based factors can contribute to behavioral expressions (see Table 1).

Behavioral expressions may result from boredom when there is lack of meaningful activity or stimulation during customary routines and activities. Anxious behaviors may occur during changes in routines such as shift changes, unfamiliar or different caregivers, change of roommate, or an individual's inability to communicate. Agitated behaviors may occur when care routines such as bathing are inconsistent with an individual's preferences. High levels of noise can cause or contribute to discomfort or misinterpretation of noises such as overhead pages or alarms causing delusions and/or hallucinations. Frustration may result from a mismatch between the activities and routines selected for an individual and his or her ability to participate in the activities/routines. For example, he or she may become frustrated and upset when trying to do things previously enjoyed or with the inability to perform tasks such as dressing or grooming.3

Medication side effects and changes should be considered when there is a behavior change. Additionally, delirium due to medications, infections, metabolic/electrolyte disturbances, or dehydration should be ruled out.

Person-Centered Dementia Care
One of the core values of a person-centered care model (Table 2) focuses on viewing things from the perspective of the dementia patient. Activities and personal approaches/interventions are determined and implemented based on their relevance to the individual's specific needs, interests, culture, and background. It is important to understand the person's life experiences; descriptions of known behaviors; preferences such as those for daily routines, food, music, and exercise; oral health; presence of pain; and medical conditions.

Learning more about an individual enables personal needs to be better anticipated and assists in more quickly identifying personalized approaches/interventions that may be the most meaningful and helpful. Better understanding a person's needs and typical response to unmet needs promotes personalized approaches that can be implemented more quickly and can often prevent a situation from turning into a catastrophic event, such as extreme fear, and the need for emergency department and hospital visits.3,4

Nonpharmacologic approaches that should be personalized based on the preferences and needs of an individual with dementia may include the following:1

• cognitive/emotion-oriented interventions (reminiscence therapy, simulated presence therapy, validation therapy);

• sensory stimulation interventions (acupuncture, aromatherapy, light therapy, massage/touch, music therapy);

• Snoezelen multisensory stimulation or transcutaneous electrical nerve stimulation;

• behavior management techniques; and

• other psychosocial interventions such as animal-assisted therapy and exercise.

Describing Behavioral Expressions
Adequately describing these behaviors allows personalized approaches to be implemented and monitored over time to evaluate their effectiveness. When describing and documenting behavioral expressions, it is essential to identify the actual/specific behavioral expression being exhibited; the frequency, intensity, duration, and impact of the behavior; and the location, surroundings, or situation in which the behavioral change occurs.3 

Avoid general terms such as "agitated" or "anxious" that may be interpreted differently among caregivers and change over time. Agitation may be manifested as verbal or nonverbal expressions such as cursing, yelling, grabbing, and striking out. Describing the details and possible consequences of resident behaviors helps to distinguish expressions such as restlessness or continual verbalization from potentially harmful actions such as kicking, biting, or striking out at others.

The frequency and intensity of these expressions can be assessed during the evaluation of various interventions. Other descriptors such as apathetic, repeating statements, questions, or gestures are also common. The more descriptive the terminology, the greater the likelihood of determining what may be causing the behavioral expression. For example, noting that the person is generally "violent," "agitated," or "aggressive" does not identify the specific behavior exhibited by a resident. Noting instead that the person responds in crowded, busy group activities by yelling or throwing furniture reflects not only a potential safety issue but should result in providing the resident with alternative activities to meet his or her needs.3

Assessing Pain and Depression
Pain is often underdiagnosed in individuals with dementia and warrants a high degree of suspicion when behavior changes are exhibited. Due to deficits in language that occur with dementia, these patients often have a reduced ability to express pain normally. Pain is likely to manifest itself as a behavioral expression. Observation for body language and other nonverbal cues is often necessary.
Resistance to care, striking out, and other aggressive expressions during care may result from pain. When such behaviors continue, implementation of personalized interventions such as empiric pain medication may be beneficial. For example, giving acetaminophen routinely (eg, 650 to 1000 mg twice per day) has been shown in many cases to reduce challenging behaviors and allows for a reduction in psychoactive medication. Administering routine pain medications may need to be evaluated for the option of more aggressive pain management. Ensuring patients' proper seating, positioning, and physical therapy may also provide significant benefit.

Depression is common in dementia patients, with up to 43% experiencing significant depressive symptoms at some stage. Untreated depression can lead to increased agitation, anxiety, irritability, and apathy. Both nonpharmacologic and pharmacologic interventions to help with depression should be considered. Additionally, serotonergic deficits seen in dementia may contribute to aggressive verbal and physical outbursts, sleep disturbance, depression, and psychosis.
Utilization of antidepressants such as selective serotonin reuptake inhibitors (eg, citalopram, sertraline) may be beneficial.1

Caregiver Tips
Caregiver-related factors can contribute significantly to behavioral expressions in individuals with dementia. Effective caregiver communication is essential in helping to prevent behavioral expressions. Tips to improve communication include the following:3

• Use a calm voice.

• Offer no more than two choices.

• Avoid open-ended questions, and keep communication simple. 

• Consider the person's nonverbal expressions as unmet needs and attend to those needs promptly.

• Create structured daily routines that are consistent and predictable.

• Keep the individual engaged with activities that match interests and capabilities.

• Use cueing strategies such as touch and verbal directions.

Interdisciplinary Care Team Approach
An interdisciplinary care team approach, including the individual's family, is desirable and considered best practice in person-centered dementia care.3 A team approach focused on considering BPSD as potential expressions of unmet needs, along with implementing personalized approaches and interventions to address behavioral expressions is essential in efforts to minimize the overutilization of antipsychotics and other behavior medications.

— Mark D. Coggins, PharmD, CGP, FASCP, is senior director of pharmacy services for skilled nursing centers operated by Diversicare in eight states, and is a director on the board of the American Society of Consultant Pharmacists. He was nationally recognized by the Commission for Certification in Geriatric Pharmacy with the 2010 Excellence in Geriatric Pharmacy Practice Award.

Using Antipsychotic Medications

1. Target symptoms.
• Identify and document specific target symptoms prior to initiation of antipsychotic medication.

• Discuss the targeted symptoms with the patient and/or appropriate surrogate decision maker.

2. Consent.
• Obtain and document consent for these medications.

• Discuss the purposes and potential adverse effects of these medications, including FDA warnings regarding antipsychotic use in dementia.

3. Monitor for effectiveness and toxicity.
• Use the lowest effective dosages, and increase dosages slowly and only if indicated clinically.

• Consider the use of standardized measures of agitation or behavioral symptoms in dementia, such as the Pittsburgh Agitation Scale or Cohen-Mansfield Agitation Inventory.

4. Consider tapering and discontinuing these medications when the target symptoms remit.
• While there is a risk of symptomatic relapse, evidence indicates that these medications may often be tapered without adverse clinical events, particularly if the symptoms were not severe.

5. Monitor patients for evidence of relapse if and when the medication is decreased/discontinued.

— MDC

References
1. Cerejeira J, Lagarto L, Mukaetova-Ladinska EB. Behavioral and psychological symptoms of dementia. Front Neurol. 2012;3:73.

2. Non-pharmacologic interventions for agitation and aggression in dementia. Agency for Health Care Research and Quality website. http://effectivehealthcare.ahrq.gov/ehc/products/559/1999/dementia-agitation-aggression-protocol-141113.pdf.  Accessed December 2, 2014.

3. Department of Health and Human Services, Centers for Medicaid and Medicare Services. Revisions to State Operations Manual (SOM), Appendix PP – "Guidance to Surveyors for Long Term Care Facilities." http://www.cms.gov/Regulations-and-Guidance/Guidance/Transmittals/Downloads/R127SOMA.PDF. Revised November 26, 2014. Accessed December 4, 2014.

4. Dementia care: the quality chasm. CCAL — Advancing Person-Centered Living website. www.ccal.org/wp-content/uploads/DementiaCareTheQualityChasm_020413.pdf. Accessed December 2, 2014.