Agitation is a common neuropsychiatric symptom in patients with Alzheimer’s dementia, resulting in significant burden to patients and caregivers. This study was conducted to better understand caregiver perspectives on the frequency and severity of agitation behaviors, captured by the Cohen-Mansfield Agitation Inventory, and to assess what constitutes a meaningful change in these behaviors.

This was a qualitative, non-interventional, descriptive study conducted in the United States. Semi-structured 1:1 interviews were completed with non- professional caregivers of patients with Alzheimer’s disease (AD) (i.e., family caregivers providing unpaid, informal care) who met the following inclusion criteria: ≥21 years old; caring for an individual with clinically confirmed AD; noticed agitation behaviors including emotional distress, excessive movements, verbal aggression, physical aggression; spent ≥4 days a week for ≥2 hours with the person with AD; and willing to participate in the virtual interview in English. Interview transcripts were analyzed thematically through detailed line-by-line inductive and deductive coding approaches using the ATLAS.ti software.

Thirty caregivers participated. Participants’ mean age was 64 (±13) years. Most participants were Caucasian/white (77%), non-Hispanic or Latinx (97%), and female (70%). Approximately half were providing care to their spouse (53%), and the remainder for a parent or parent-in-law. Several key themes on what constitutes ‘meaningful change’ emerged. All caregivers tied a meaningful change in agitation behaviors to a change in behavior frequency (becoming less frequent or stopping entirely). Beyond frequency, themes describing meaningful change included: change in behavior intensity; apparent intent to disturb or cause harm to self or others; potential to cause serious harm; amount of harm caused; more “normal” behavior; shorter episode duration; and less worry, frustration, or isolation. Additionally, a shift from verbally aggressive behavior to physically aggressive behavior was considered an escalation in agitation severity and meaningful worsening. Thus, unique to physical aggression, a meaningful change was described as a de-escalation to verbal aggression.

Caregivers report several themes on what constitutes meaningful improvement or worsening of agitation behaviors in individuals with AD. A change in the frequency of agitation behaviors was consistently reported by caregivers as important, with decreased frequency perceived as a meaningful improvement.