Unraveling the Mysteries of What Causes Agitation in Patients With Dementia

Witnessing agitation in an older adult struggling with dementia is upsetting and unsettling for family members and caregivers, and unraveling its possible causes and triggers is worthy of detective work, according to a recent presentation called "Behavioral and Pharmacological Approaches to Agitation Associated with Major Neurocognitive Disorders" at a recent meeting of mental health professionals.

Consider the case of 87-year-old Mrs. Rose, a woman with chronic pain and mild cognitive impairment, Marc Agronin, MD, senior vice oresident for behavioral health and chief medical officer for the MIND institute at Miami Jewish Health, told his audience of mental health professionals.

Agronin used the case to discuss the ubiquity of agitation in dementia and the critical role of a proper and through assessment in order to identify agitation’s causes. Moreover, if professionals and caregivers can understand the context and function of the behaviors of the agitated patient, behavior modification, similar to what is used in children with development disabilities, can stem the distress, he said.

In the case, Mrs. Rose’s daughter calls to report that her mother is crying and screaming a lot, fighting with her husband, accusing her husband of having an affair with her caregiver, and throwing herself on the ground, which forces her older husband to call 911 to pick her up.

“It can seem very daunting to sort things out,” said Agronin. The issues are many: pain, confusion, sadness, grief, paranoid, marital discord, deconditioning, and inadequate help.

Agitation, according to the International Psychogeriatric Association, is excessive motor activity, or verbal or physical aggression, that causes observed, or inferred, emotional distress, and is severe enough to cause excess disability that that impairs a number of different areas. Up to 80% to 90% of patients with neurocognitive disorders will have behavioral and psychological symptoms of dementia (BPSD), of which agitation is one of many, he said.

Agitation is associated with worse outcomes, including accelerated disease progression, increased risk of long-term care placement, increased mortality, increased caregiver stress, and increased costs of caregiving.

Because of the underlying neurocognitive disorder (such as Alzheimer or Parkinson disease), the neurocircults in the brain are damaged, rendering affective regulation and executive function unable to distinguish appropriate emotional responses from inappropriate ones, or destroying the ability to understand, organize, prioritize, or respond to challenges.

Three key neurotransmitter systems—cholinergic, serotonergic, and dopaminergic—undergo metabolic changes that lead to specific types of behavior and emotional changes.

Sometimes the neurocognitive disorder can be confirmed based on the type of agitation that is occurring, Agronin said. For example, patients with Lewy body disease may see little people running around. Parkinson disease is associated with paranoia and psychosis. Frontotemporal dementia, which typically affects younger people, may involve bizarre behavior and eating strange things.

Medical, psychiatric, medication, psychological, and environmental factors are all possible causes underlying the agitation, Agronin said. He noted, for example, that people with intellectual disabilities are living longer. People with personality disorders may see certain behaviors increase and escalate.

Compounding the problem, caregivers may not be trained to handle the patient; if the caregiver is also a spouse or partner, they may have difficulty accepting that their family member can no longer do what they use to, such as socialize. The caregiver may be burnt out or ill, as well.

“You always have to interview and speak to the caregiver themselves,” said Agronin, adding that they will almost always deflect the question and deny that there is a problem.

Assessment presents challenges, he said, including a lack of accurate history from the patient, intermittent, unpredictable behaviors, and inaccurate, variable reports that may be subject to interpretation depending on the expertise and observation schedule of the person doing the reporting.

Clinicians must probe for what exactly is meant by agitation and ask about specific behaviors, triggers, and consequences.

Labs, imaging, a mental status exam, and a physical and neurological exam needs to be thorough, with the provider examining every inch, looking for possible signs of discomfort, such as a rash. Agronin cautioned, though, that brain imaging probably won’t be helpful unless there had been a recent fall.

Once any other cause of the agitation is ruled out, Agronin strongly recommends the use of applied behavior analysis (ABA)—the same method that is used for children with autism.

“In older adults with dementia, there’s no reason why we can’t apply this to an older adult as well,” he said. A major barrier, however, is a lack of funding for it from Medicare, as well as a lack of providers.

ABA can help those involved with the patient’s care to understand the context of the behavior and the function that it does it plays. “If we can understand their function, we can begin to modulate their behavior,” he said.

The PASTE acronym—pain attenuation, attention, stimulation, tangibles, and escape—outlines the 5 main functions of behavior, he said. Using the ABA model to manage behavior, one would look at the antecedent stimuli to understand which environmental or internal conditions trigger the problem behavior, the actual behavior that is observable and measurable, the consequences, and the motivational variables, which serve to make the consequence more or less valuable.

In the case of Mrs. Rose, her crying, screaming, fighting, and accusations were motivated by social isolation, a lifetime history of medication seeking and overeating, sensitivity when changed, and an insecure attachment to husband. Those served the function of attention, tangibles, pain attenuation and escape, and attention/stimulation, he said.

By using behavioral interventions, the goal is to prevent the behavior from occurring in the first place, rather than reacting to it.

Potentially inappropriate prescriptions must be ruled out as well; Agronin said the average older patient with dementia might be on 8 to 12 medications, and might have several doctors and specialists who never talk to each other.

Medications are needed when behavioral approaches don’t work, there are psychotic symptoms, there is an underlying psychiatric disorder, or there are dangerous or severe symptoms. However, the problems with drug treatments is that there is no FDA-approved indication for agitation in dementia, and so off psychotropic medication use is off label. In addition, their effectiveness is limited and mixed, and can side effects.