Nonpharmacologic Approaches to Adverse Behaviors Associated with Dementia

Dementia is predicted to affect more than 150 million people by 2050¹ and is the second most common neurologic cause of death worldwide.² Adverse behaviors are an important component of dementia symptomatology. Adverse behaviors in dementia can include a wide variety of symptoms, including apathy, depression, agitation, hallucinations, and sleep disturbances. Adverse behaviors are highly prevalent in dementia, with some estimates suggesting that up to 95% of individuals with dementia experience such behaviors.³ Adverse behaviors are associated with increased caregiver stress,⁴ earlier nursing home placement,⁵ global deterioration,⁶ and increased mortality risk.⁷ With the exception of the newly approved brexpiprazole (Rexulti; Otsuka, Rockville, MD), there are no Food and Drug Administration (FDA)–approved pharmacologic therapies specifically indicated for dementia-related adverse behaviors.

Nonpharmacologic approaches are preferred as first-line treatment for adverse behaviors because they do not incur side effects, which are inherent in pharmacologic approaches, and the literature suggests that they can be effective. They therefore present attractive options for treating the challenging symptoms of dementia. We describe some nonpharmacologic approaches to managing dementia-related adverse behaviors.

General Approaches to Adverse Behaviors

Adverse behaviors in dementia often have contributors that stem from the person with dementia (PWD), the caregiver, and the environment. The best general nonpharmacologic approach to managing these behaviors takes all of these factors into account. An initial evaluation of adverse behaviors should ensure that potential PWD-related factors such as infection or poor sleep are ruled out. Once a general assessment has been performed, the behaviors themselves should be addressed. The best-known approach is the DICE method (Describe, Investigate, Create, Evaluate), which encourages a detailed understanding of an adverse behavior and all of the potential factors that could be contributing to the behavior, followed by development of interventions that target those factors.⁸ Interventions based on the DICE method have been demonstrated in early studies to reduce caregiver stress.⁹ The DICE method, however, can be challenging to implement because of its time-intensive nature.¹⁰

Assessment and management of pain are likely to be important components of managing adverse behaviors. Pain has been reported to have a prevalence of 45% to 50% among PWD¹¹ and has been associated with increased presence and severity of adverse behaviors.¹² Pain can be difficult to assess, particularly in later stages of dementia, when the ability to communicate becomes impaired and self-reporting can be unreliable.¹³ Given this reality, administering pain medication on a consistent schedule may be a consideration when PWD with advanced dementia develop worsening adverse behaviors. The evidence to support the use of scheduled analgesia is mixed, with some studies showing a decrease in agitation¹⁴ and others showing no benefit.¹⁵ The mixed results likely stem in part from differences across studies in the types of pain medication selected. It is necessary to consider potential harms in providing regular doses of pain medication (eg, the potential risk of providing regular doses of acetaminophen to a generally healthy individual is far less than risks associated with regular doses of opiate medication and should be considered first). Further research is needed to better understand whether specific types of analgesia provide benefit and for which PWD.

Hallucinations

Hallucinations commonly occur in dementia. They may be nonintrusive and even pleasant. In their more challenging forms, however, they can provoke agitation, aggression, and sleep disturbances. Hallucinations can be triggered by environmental factors, such as poor lighting or heavily patterned flooring and fabrics, which lead to visual misperceptions of benign objects in a room. Similarly, sensory problems including diminished vision and hearing can contribute to hallucinations.

Nonpharmacologic approaches to hallucinations (Table) include paying close attention to potential triggers and attempting to make accommodations for them. Strategies such as removing objects or pictures from a room that seem to trigger hallucinations are typically easy to do. Covering heavily patterned or reflective surfaces can reduce illusions that may contribute to hallucinations. In addition, it is important to assess for visual or hearing impairment and to optimize environmental and other conditions accordingly.

If hallucinations persist after environmental factors and potential visual misperceptions have been addressed, caregivers could attempt to address the hallucinations themselves. Validation of the fear that they generate and the sensation of reality may help calm the PWD. Other tactics to consider could include “removing an intruder from the house” or setting an extra setting at the table for perceived guests. If nonpharmacologic approaches do not help in management of the hallucinations, and the hallucinations are distressing to the PWD, medical management may be warranted.

Traumatic Experiences

Traumatic experiences can contribute to adverse behaviors in PWD, including aggressive behavior and reliving past experiences. Having been a prisoner of war has been associated with increased agitation and other behavioral changes.^16,17 Nursing assistants caring for Holocaust survivors have described situations such as PWD seeing them as prison guards and behaviors such as hiding food.¹⁸ Other difficult experiences, including the death of a spouse, may be relived by the PWD. Conversely, the PWD may forget about the death of a spouse and incessantly ask where the spouse is, only to reexperience grief when reminded of the spouse’s passing.

There are no literature-informed approaches to address posttraumatic stress disorder (PTSD) and repetitive grief symptoms in this population. Psychotherapeutic approaches to managing PTSD are unlikely to work in PWD because of inadequate cognition and lack of insight. Commonsense approaches (Table) may include avoiding triggers for flashbacks and comforting PWD during agitated episodes precipitated by negative memories. In our clinical experience, attempting to avoid reminding the PWD of a deceased spouse might be effective, but also can backfire if the PWD realizes that truth is being withheld. This also raises ethical issues regarding lying to the PWD and can be an uncomfortable situation for family caregivers. As an alternative, caregivers can be educated to engage more deeply and enter the world of PWD to allow them to express their emotions fully and provide some relief from that expression.¹⁹ Dealing with difficult memories requires a PWD-centered and compassionate approach in helping families navigate these challenging scenarios.

Care-Resistant Behavior

Care-resistant behavior (CRB), or care-refusal behavior, is exemplified by actions taken by a PWD to avoid an activity of daily living, such as bathing or taking medications.²⁰ CRB increases as dementia worsens and the PWD requires more assistance. Some activities, like mouth care, may trigger CRB because the PWD may perceive mouth care as a threatening act on the part of the caregiver.²¹ Loss of short-term memory combined with access to long-term memories changes how PWD perceive time, causing PWD to assert that they “just had a bath” when it has been days or weeks since one was taken.

There are several approaches that family caregivers can use when faced with CRB (Table). Family caregivers must not argue and try to convince the PWD that the PWD is wrong and needs the specific care activity. Family caregivers also must avoid talking to the PWD as if the PWD were a child, a type of speech known as “elderspeak,”²² which will escalate refusal behaviors. “Asking for help” is one strategy that often is successful²⁰: For example, “Please help me by putting on this shirt.” Another useful strategy is “entering their reality,” which is providing a vague and general reason for the caregiving activity that is aligned with the PWD’s past occupation, hobbies, or values.²⁰ For example, one retired attorney with moderate dementia would only allow family caregivers to remove soiled clothing if they told him “The judge is waiting.”

Apathy

Apathy, one of the most common adverse behaviors in dementia, occurs early and remains prevalent over time. There are few pharmacologic treatments for apathy, which can be a frustrating symptom for caregivers to manage. Commonsense approaches to apathy (Table) include providing a consistent schedule of activities and striving to choose activities that will attract the interest of the PWD; in practice, apathy can be a difficult symptom to manage. Caregiver education is crucial to mitigate frustration and stress.

One approach to consider may be doll therapy, which is an intervention involving having the PWD interact with a doll several times daily and as needed when adverse behaviors arise.²³ This intervention decreased apathy and other adverse behaviors in PWD with moderate to severe dementia when used in conjunction with pharmacologic (typically antipsychotic) therapy.²⁴ In this study, the participants were on pharmacologic therapy at enrollment, and there were no significant changes in pharmacotherapy use at the end of the 90-day study period. Further research is needed to replicate these results and follow participants for a longer period and in the absence of pharmacologic treatments. Interventions such as doll therapy or robotic pets need to be considered carefully to avoid infantilization of PWD. However, such approaches are easy to implement and have the potential to be useful when deployed appropriately.

Conclusion

Adverse behaviors associated with dementia present challenges to the care team, including caregivers and clinicians, and can make managing dementia complex. Neurologists and other clinicians can help caregivers by explaining that the behaviors are the result of neuronal loss and are not deliberate. For example, a practitioner can point to the area of the anterior cingulate cortex on a model of the brain and tell family members, “This area helps people start activities. When it is damaged by dementia, the result is apathy.” Another educational strategy that we have found to be useful for educating caregivers is the analogy of the shrinking box²⁰: we explain that the brain is like a large box of holiday decorations, with the newest ones on top and the oldest ones on the bottom. As the box shrinks, the newest decorations tumble out and cannot be put back into the box. As the box continues to shrink, more decorations fall out, and it is easier to access the older decorations. We then explain that the brain is losing neurons and is shrinking. As a result, recent memories are lost.

Despite the prevalence of dementia-related adverse behaviors, treatment options are understudied. Nonpharmacologic approaches to these behaviors are ideal as a first-line strategy; however, randomized trials on how to approach specific adverse behaviors are sparse. Optimal care for PWD who exhibit adverse behaviors often includes a combination of nonpharmacologic approaches complemented by medications. More research is needed to study the effectiveness of existing approaches and to develop new ones.