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Patienten in weit fortgeschrittenen Stadien der Demenz leiden an einer Vielzahl qualender, somatischer und psychischer Symptome. Zu dieser Zeit besteht das einzig sinnvolle Behandlungsziel in der Optimierung ihrer Lebensqualitat. Soll dieses Ziel erreicht werden, durfen Kommunikation und Beziehung zu den Kranken niemals abreisen, mussen diese die Warme und Nahe zugewandter Menschen spuren, die ihnen in ihrer aus den Fugen geratenen Welt Sicherheit geben. Demente Menschen sind hochsensibel und leiden darunter, wenn ihnen nicht respektvoll begegnet wird. Soweit sie noch selbst kleine, autonome Entscheidungen treffen konnen, sollten diese zugelassen und akzeptiert werden. Nur wenn diese warme, lebendige Beziehung erhalten bleibt, kann es auch gelingen, Schmerzen und qualende Beschwerden zu erkennen, fachlich und menschlich kompetent zu lindern und die Kranken bis zuletzt einfuhlsam zu begleiten.

Background: In patients with very severe dementia self-rating of quality of life usually is not possible and appropriate instruments for proxy-ratings are not available. The aim of this project is to develop an instrument of clinical proxy-ratings for this population. Methods: Using electronic instruments, physicians and nurses recorded patient behaviour and changes of behaviour over a period of one year. Based on these data a list of 65 items was generated and subsequently allocated to 14 categories. This list was tested in 217 patients (61–105 yrs) with dementia diagnosed according to ICD-10 by both physicians and nurses. The severity of dementia was assessed by means of the Global Deterioration Scale (GDS) and the Brief Cognitive Rating Scale (BCRS). The Spitzer-Index (proxy-rating) was used as a global quality of life measure. Activity of daily living was rated using the Barthel Index. Results: A factor analysis of the original 65 items revealed 5 factors (communication, negative affect, bodily contact, aggression, and mobility). By stepwise removing items we obtained satisfactory internal consistencies of the factors both for nurses' and physicians' ratings. The factors were generally unrelated. The validity of the instrument was proven by correlations of the factors communication and mobility with the Brief Cognitive Rating Scale (BCRS) and the Barthel-Index. Conclusion: The results demonstrate the reliability and validity of the Vienna List as a proxy rating measurement of quality of life in patients with severe dementia. The psychometric properties of the scale have to be proved in further studies.