Background: fact Boxes are decision support tools that can inform about treatment effects. Objectives: to test whether Fact Box decision support tools impacted decisional conflict, knowledge and preferences about the use of antibiotics and artificial hydration in advanced dementia. Design: randomized controlled trial. Setting: Swiss-German region of Switzerland. Subjects: two hundred thirty-two participants (64 physicians, 100 relatives of dementia patients, 68 professional guardians) randomly allocated to intervention (N = 114) or control (N = 118). Intervention: two-page Fact Box decision support tools on antibiotics for pneumonia and artificial hydration in advanced dementia (at 1-month). Methods: participants were mailed questionnaires at baseline and one month later that asked questions about treatments based on hypothetical scenarios. The primary outcome was change in decisional conflict (DCS-D; range 0 < 100) about treatment decisions. Secondary outcomes included knowledge about treatments (range 0 < 7) and preferences to forego treatments. Results: participants were: mean age, 55.6 years; female, 62.8%. Relative to control participants, intervention participants experienced less decisional conflict about using antibiotics (unstandardized beta (b) = −8.35, 95% Confidence Interval (CI), −12.43, −4.28) and artificial hydration (b = −6.02, 95% CI, −9.84, −2.20) at 1-month compared to baseline. Intervention participants displayed greater knowledge about the use of antibiotics (b = 2.24, 95% CI, 1.79, 2.68) and artificial hydration (b = 3.01, 95% CI, 2.53, 3.49), and were significantly more likely to prefer to forego antibiotics (odds ratio, 2.29, 95% CI, 1.08, 4.84) but not artificial hydration. Conclusions: fact Box decision support tools reduced decisional conflict, increased knowledge and promoted preferences to forego antibiotics in advanced dementia among various decision-makers. Trial registration: FORSbase (12091).

Quality of life (QOL) is increasingly being suggested as a crucial outcome variable for interventions that aim to maintain or improve health and psychological resources in old age. Currently, two main approaches to measuring QOL can be distinguished: (1) the sQOL approach which measures an individual’s subjective evaluation of his or her overall life situation and QOL; (2) the oQOL approach that infers QOL of an individual from the outside, e.g., via measurement of health impairments. Both approaches, however, are problematic: In the first case, a large majority of individuals report relatively high levels of sQOL that are sometimes in stark contrast to observable impairments (known as the well-being paradox; Staudinger, 2000 ). This suggests that improving impaired resources does not necessarily lead to improved sQOL (although there may be positive effects on the autonomy of these individuals). The second approach is problematic because improved oQOL leads only to an increase in self-reported overall sQOL under very rare conditions – and one cannot assume that an increase in resources necessarily has led or will lead to higher levels of sQOL. Therefore, we propose a new, functional quality of life (fQOL) approach to determine quality of life. It combines the existing approaches by linking the subjective representations of objectively measurable resources to their functional value for pursuing individually meaningful activities and goals. From this model, fQOL-improving interventions as well as methods to evaluate the effectiveness of QOL-interventions can be derived.

BackgroundThe proportion of older people with advanced dementia who will die in nursing homes is constantly growing. However, little is known about the dying phase, the type of symptoms, the management of symptoms and the quality of life and dying in people with advanced dementia. The ZULIDAD (Zurich Life and Death with Advanced Dementia) study aims at extending the current scientific knowledge by providing first data from Switzerland.MethodsThe ZULIDAD study employs a prospective design to study nursing home residents with advanced dementia for three years or until their death in eleven nursing homes in Zurich. Observational data from quarterly questionnaires for relatives and primary nurses is combined with data from the Resident Assessment Instrument – Minimum Data Set (RAI-MDS). Special focus is put on 1) the cross-sectional analysis of baseline and post-mortem data regarding quality of life and quality of dying and how the perceptions of these measures differ between relatives and primary nurses, 2) the longitudinal analyses of established health outcome measures (e.g., EOLD, MSSE, BISAD, QUALID) in order to understand their trajectories and 3) international comparisons of cross-sectional and longitudinal data.DiscussionThe ZULIDAD study is one of the few existing prospective studies on end-of-life care in dementia and it is the first prospective study to describe the situation in Switzerland. Its multi-perspective approach allows a comprehensive approximation to central health outcome measures at the end of life such as pain, suffering or quality of life. Providing insights into the current provision of care, it can serve as a basis for improving dementia end-of-life care in Switzerland and internationally.

Current health psychological theories and research mainly cover improvement of health, recovery from illness or maintenance of health. With this theoretical manuscript, we argue that in ageing societies in which chronic illness and multimorbidity become the norm rather than the exception, this focus of health psychology is no longer sufficient. Instead, in line with a recent conceptualisation of health as "the ability to adapt and to self-manage", we suggest that the centre point of a health psychology of ageing needs to be the stabilisation of health. Current theories of lifespan development, such as the model of selection, optimisation and compensation, the motivational theory of life span development, the two-process model of assimilative and accommodative coping and the recently introduced functional quality of life model are described with regard to their assumptions and related research focussing on stabilisation. All of these models explicitly comprise stabilisation as an important process of successful, healthy ageing. So far, however, the empirical research examining these models does not take stabilisation into account. Implications for research methods and practise of health stabilisation are discussed.