Towards defining restlessness in individuals with dementia

Abstract

Objectives Most individuals with dementia develop significant behavioral problems. Restlessness is a behavioral symptom frequently endorsed by caregivers as distressing, yet is variably defined and measured. Lack of conceptual and operational clarity hinders an understanding of this common behavioral type, its prevalence, and development of effective interventions. We advance a systematic definition and understanding of restlessness from which to enhance reporting and intervention development. Method We reviewed the literature for existing definitions and measures of restlessness, identified common elements across existing definitions, assessed fit with relevant theoretical frameworks, and explored the relationship between restlessness and other behavioral symptoms in a data set of 272 community-dwelling persons with dementia. Results Twenty-five scales assessing restlessness were identified. Shared components included motor/neurological, psychiatric, and needs-based features. Exploratory analyses suggest that restlessness may co-occur primarily with argumentation, anxiety, waking the caregiver, delusions/ hallucinations, and wandering. We propose that restlessness consists of three key attributes: diffuse motor activity or motion subject to limited control, non-productive or disorganized behavior, and subjective distress. Restlessness should be differentiated from and not confused with wandering or elopement, pharmacological side effects, a (non-dementia) mental or movement disorder, or behaviors occurring in the context of a delirium or at end-of-life. Conclusion Restlessness appears to denote a distinct set of behaviors that have overlapping but non-equivalent features with other behavioral symptoms. We propose that it reflects a complex behavior involving three key characteristics. Understanding its specific manifestations and which components are present can enhance tailoring interventions to specific contexts of this multicomponent behavioral type.

Anxiety, Anxiety Symptoms, and Their Correlates in Persons with Dementia in Norwegian Nursing Homes: A Cause for Concern

“…Restlessness was the most frequent anxiety symptom (71.1%) found in a study on patients with dementia by Shankar et al [15] and one of the most stressful behavior symptoms for caregivers of persons with dementia [38]. Anxiety symptoms like “palpitations” and “dry mouth, sinking feeling in the stomach” were less often reported in present study.…”

Dementia‐related restlessness: relationship to characteristics of persons with dementia and family caregivers

“…Specifically, the ABID includes only a single item for restlessness, which may not capture the complexities of this behavior type. However, there is no adequate multidimensional instrument available to measure dementia‐related restlessness (Gitlin et al , ; Regier and Gitlin, ). Nevertheless, even with this single item, we show distress associated with the presence of restlessness among other co‐occurring behaviors on persons with dementia and their caregivers by using a commonly‐used available measure.…”

“…Caregivers also find NPS one of the most challenging aspects of dementia care, resulting in increased upset and depression (de Vugt et al, 2005;Allegri et al, disease (Lyketsos et al, 2002;Profenno et al, 2005), each person may manifest a unique symptom profile. Restlessness is an NPS that occurs frequently and is cited as distressing by caregivers of persons with dementia (Regier and Gitlin, 2016). Emblematic of NPS, restlessness is often referred to as a form of agitation despite some evidence that it may be a distinct but co-occurring behavior (Algase et al, 2007a;Algase et al, 2007b).…”

Automated sensor‐based detection of challenging behaviors in advanced stages of dementia in nursing homes

“…In addition, in a given time interval of 5 minutes, some residents did not only show one behavior but showed overlapping symptoms, as described by other reports before. [33][34][35] This leaves space for ambiguity despite a well-defined codebook for the behaviors and rater training. Still, given the large number of observations over the course of four weeks, such ambiguities would be expected to be attenuated when aggregating across the entire time period within each patient.…”