Terminal agitation in dementia: Challenges and opportunities

Terminal agitation (TA), also referred to as terminal restlessness or terminal delirium, is a complex, multifactorial clinical syndrome that occurs at the end of life. While TA is evident in dementia (including Alzheimer's disease), it is not exclusive to the condition and also occurs in other terminal illnesses, e.g., cancer. Currently, no clinical tools exist or have been validated to assess TA in dementia. This may hinder the correct identification of TA and further contribute to the incorrect estimation of TA prevalence. Due to the complex diagnostic profile of TA, it may be frequently underrecognized in individuals with dementia. There is also a lack of consensus on clinical terminology, operational definition (e.g., temporality, symptomology) and conceptualization of TA. This may be attributed in part to cultural context and the variability in describing the final stages of dementia. Thus, reported prevalence rates of TA in dementia are heterogeneous in the literature. Further, using multiple descriptions or terms for TA in the literature suggests that the syndrome may occur in groups, or clusters of symptoms. There is an association between pain, agitation, and delirium in various stages of dementia, particularly at the end of life. Differentiating TA, or delirium from behavioral and psychological symptoms of dementia (BPSD) is often difficult. The complex interaction between TA, dementia, and overlapping BPSD remains poorly understood and underresearched. Therefore, we outline priorities for future action and research, including the development of diagnostic and assessment tools to identify TA in dementia, and the establishment of consistent criteria for defining this syndrome.