Dying with dementia: most frequent symptoms. A review of the literature / Sterben mit Demenz: die häufigsten Symptome. Eine Literaturübersicht

Abstract Sensing, observing and interpreting the symptoms of persons suffering from dementia is very challenging. The difficulties lie in their restricted capacity to communicate and irregular transitions from a chronic-stable to an acute-critical condition both in the course of their symptoms and in the slow but continuous process of deterioration. The aim of this integrative literature review was to identify the symptoms dementia patients present in the final twelve months of their lives and to identify instruments for symptom assessment. To this end, a comprehensive literature search within the electronic databases Medline® (PubMed), Cinahl® (EBSCO), PsycINFO® (OVID) and Cochrane Library for systematic reviews® and for clinical trials® in both German and English was performed including publications from January 2000 to July 2012. Six symptoms were identified as frequent and common in the end-of-life phase of people with dementia: respiratory distress, pain, mood swings, restricted mobility, restricted food and fluid intake and behavioural and psychosocial symptoms. Knowledge of atypical symptom manifestation requires critical reflection about perceptions and observations, interpretation of these observations, development of assumptions and location within the context of everyday life in the meaning of clinical reasoning.