Self-Reported Behavioral Symptoms of People With Dementia: A Pilot Study Examining Individuals' Perceived Illness Experience

Background and Objectives Persons with dementia experience behavioral symptoms, such as agitation and repeating questions, which have been reported as one of the most burdensome and stressful aspects of providing care by dementia caregivers. However, no published studies have assessed the subjective experience of behavioral symptoms and distress from people with dementia. Research Design and Methods The current pilot study examined the feasibility of people with dementia providing self-reported behaviors and behavioral-related distress. Data from a larger, ongoing research study was used consisting of people with mild to moderate dementia (n = 12) residing in a long-term memory care facility. Results Participants were able to provide reliable (alpha = 0.91) self-reported data concerning their own behaviors and behavioral-related distress with variability among responses. The most frequently self-reported behaviors included agitation (66.7%) and complaining/criticizing things (58.3%) while the least-reported behaviors were refusing to be left alone (8.3%) and yelling/swearing (8.3%). The highest behavioral distress reported was agitation (58.3%) while the least was wandering (8.3%). Discussion and Implications Understanding the subjective, perceived experience of people with dementia provides valuable information on the illness experience. Additional research is needed to examine the role and impact of self-reported behaviors and the resulting behavioral-related distress on outcomes of well-being. Subjective reports of behavioral-related distress could predict well-being, above and beyond that of traditional objective measures, creating the potential for novel nonpharmacological intervention development for people with dementia.