Dementia-related restlessness: Relationship to characteristics of persons with dementia and family caregivers

Objective: Dementia-related restlessness is commonly endorsed by caregivers but not well understood. This study examines differences in characteristics (demographics, cognitive status, physical function, pain, and mood) of persons with dementia whose caregivers endorse restlessness versus those who do not. We also examine the relationship of restlessness to caregiver well-being including burden, upset with behaviors, mastery, and depressive symptomatology. Methods: We combined baseline data from three caregiver intervention studies of community-dwelling persons with dementia who exhibited neuropsychiatric symptoms (n = 569) as measured by the Agitated Behaviors in Dementia Scale. We conducted bivariate correlations and independent t-tests by using the Agitated Behaviors in Dementia Scale restlessness item. Results: Nearly 65% (n = 367) of dementia caregivers reported restlessness. There were no significant differences between those with and without (n = 202) reported restlessness concerning functional status (physical or cognitive). However, persons with restlessness had significantly higher pain scores (p < 0.01), were more likely to be on behavioral medications (p < 0.001), and had more neuropsychiatric symptoms as compared with persons without restlessness (M = 11.11, nonrestless; M = 6.61, restless) (p < 0.001). Caregivers of persons with dementia-related restlessness reported greater burden (p < 0.001), behavioral upset (p < 0.001), depression (p < 0.001), and lower mastery providing care (p < 0.01) compared with caregivers of persons without dementia-related restlessness. Conclusions: Restlessness is a common neuropsychiatric symptom that appears to be associated with poorer functioning in persons with dementia and greater distress in their caregivers. Further research is needed to understand the unique contributions of restlessness to care burden and quality of life of persons with dementia, as well as ways to address this distressing symptom.