The German version of the Mini Suffering State Examination (MSSE) for people with advanced dementia living in nursing homes.

BACKGROUND: The Mini Suffering State Examination (MSSE) has been explicitly recommended to assess suffering in dementia patients. This study aimed to develop a German version of the MSSE and assess its psychometric properties involving people with advanced dementia (PAD) in a nursing home setting. METHODS: The MSSE was translated into German, and 95 primary nurses administered it cross-sectionally to 124 PAD in Zurich, Switzerland. The psychometric properties of the German MSSE version were calculated for this population. RESULTS: The mean age of the PAD was 83.3 years (SD = 9.1, range = 55-102 years), and 98 of them (79.0%) were women. The Kuder-Richardson Formula 20 coefficient for the entire scale (0.58), the eight items relating to objective health conditions (0.39), and the professional and family estimation of the patient's suffering (0.64) indicated low internal consistency. A confirmatory factor analysis indicated an unsatisfactory fit to a one-factor structure, with a comparative fit index and root mean square error of approximation of 0.71 and 0.08, respectively, and a Tucker-Lewis index of 0.64. The MSSE total score was significantly but moderately correlated with the total scores of the Symptom Management-End-of-Life with Dementia (SM-EOLD) scale (Pearson's correlation coefficient (r) = -0.44; p < 0.05), the physical suffering scores (r = 0.41; p < 0.05), and the psychological suffering scores (r = 0.55; p < 0.05). CONCLUSIONS: The German version of the MSSE questionnaire did not perform well in the nursing home setting involving PAD. The instrument had low internal consistency, doubtful validity, and could not discriminate between suffering and other distressing symptoms. We do not recommend its use in this population.

Physician and Surrogate Agreement with Assisted Dying and Continuous Deep Sedation in Advanced Dementia in Switzerland.

BACKGROUND: Assisted dying and continuous deep sedation (CDS) are controversial practices. Little is known about the perceptions of physicians and surrogates about these practices for patients with advanced dementia. OBJECTIVES: To describe and compare physician and surrogate agreement with the use of assisted dying and CDS in advanced dementia. DESIGN, SETTING, SUBJECTS: Physicians (n = 64) and surrogates (n = 168) of persons with advanced dementia were recruited as part of a randomized controlled trial in Switzerland that tested decision support tools in this population. METHODS: At baseline, the participants were asked about their agreement with assisted dying and CDS in advanced dementia using the following response options: "completely agree," "somewhat agree," "somewhat disagree," "completely disagree," and "do not know." Multivariable logistic regressions compared the likelihood that surrogates versus physicians would completely or somewhat agree (vs. completely or somewhat disagree) with these practices. RESULTS: The physicians and surrogates, respectively, had a mean age (SD) of 50.6 years (9.9) and 57.4 years (14.6); 46.9% (n = 30/64) and 68.9% (n = 115/167) were women. A total of 20.3% (n = 13/64) of the physicians and 47.0% (n = 79/168) of the surrogates agreed with assisted dying in advanced dementia. Surrogates were significantly more likely to agree with this practice than physicians (adjusted odds ratio, 3.87; 95% CI: 1.94, 7.69). With regard to CDS, 51.6% (n = 33/64) of the physicians and 41.9% (n = 70/169) of the surrogates agreed with this practice, which did not differ significantly between the groups. CONCLUSIONS: The surrogates were more agreeable to considering assisted dying in the setting of advanced dementia than the physicians, and about half of the participants in both groups reported CDS to be an appropriate option for this population.

Fact Box decision support tools reduce decisional conflict about antibiotics for pneumonia and artificial hydration in advanced dementia: a randomized controlled trail.

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).

The last phase of life with dementia in Swiss nursing homes: the study protocol of the longitudinal and prospective ZULIDAD study.

BACKGROUND: The 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. METHODS: The 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. DISCUSSION: The 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.

Stabilisation of health as the centre point of a health psychology of ageing.

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.