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

Eicher, Stefanie; Theill, Nathan; Geschwindner, Heike; Moor, Caroline; Wettstein, A.; Bieri-Brüning, Gabriela; Höck, Christoph; Martin, Mike; Wolf, Henrike; Riese, Florian

doi:10.1186/s12904-016-0151-2

Cited by 7 publications

(12 citation statements)

References 43 publications

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“…The present study was part of the Zurich Life and Death with Advanced Dementia (ZULIDAD) study, the aim of which was to describe the situation of PAD dying in nursing homes (19). It was a prospective, multi-perspective, observational study conducted in 11 nursing homes in the Zurich area of Switzerland: 10 municipal nursing homes and one privately managed nursing home specializing in dementia care (Sonnweid AG).…”

Section: Study Populationmentioning

confidence: 99%

“…It was a prospective, multi-perspective, observational study conducted in 11 nursing homes in the Zurich area of Switzerland: 10 municipal nursing homes and one privately managed nursing home specializing in dementia care (Sonnweid AG). Details of the recruitment process are available in the published study protocol (19). The residents in the participating institutions were screened using the nursing homes' Resident Assessment Instrument-Minimum Data Set (RAI-MDS) (Swiss version 2.0) databases (20).…”

Section: Study Populationmentioning

confidence: 99%

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

Zumstein

Yamada

Eicher

et al. 2022

Preprint

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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.

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Section: Study Populationmentioning

confidence: 99%

Section: Study Populationmentioning

confidence: 99%

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

Zumstein

Yamada

Eicher

et al. 2022

Preprint

Self Cite

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“…The behavioural and psychological symptoms of dementia (BPSD) often complicate end-of-life care. Agitation remains frequent, even in the final months before death [73], but more longitudinal studies are needed to elucidate the course of BPSD in advanced dementia [74]. Treatment of BPSD is best achieved by adopting a systematic approach and frequently involves both non-pharmacological and pharmacological measures [75].…”

Section: The End Of Life With Dementia (Florian Riese)mentioning

confidence: 99%

Conference report: dementia research and care and its impact in Switzerland

Leyhe¹,

Jucker²,

Nef³

et al. 2020

Swiss Med Wkly

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In October 2019, a Swiss panel of experts met for the Dementia Summit in Brunnen, Switzerland, to discuss the latest scientific findings on basic and clinical research, as well as practical and political approaches to the challenges of dementia disorders in Switzerland. Here, we present the conference summary. To study pathophysiological changes, as well as the underlying mechanism of fluid biomarker changes, excellent experimental approaches, including transgenic mouse models, are available. Current knowledge about presymptomatic disease progression is largely derived from the longitudinal study of individuals with autosomal dominant mutations (Dominantly Inherited Alzheimer Network). Importantly, more than one third of identified dementia risk factors can be modified. For example, sleep disturbances are not only associated with dementia and neurodegeneration in specific brain regions, but also precede cognitive decline and contribute to the development of brain pathology. Regarding the neuropsychological examination of dementia disorders, standardised tests of social cognition, one of the six cognitive domains that must be assessed according to the fifth edition of the Diagnostic and Statistical Manual for Mental Disorders, are missing, but now under development. The most important new therapeutic approach in the treatment of Alzheimer’s disease is the current attempt to prevent β-amyloid accumulation. While until now clinical studies have failed because of side effects or insufficient clinical effectiveness, Biogen recently announced positive results of high doses of aducanumab, a monoclonal antibody against β-amyloid. Other approaches also show promise. In China, sodium oligomannate has been approved to treat Alzheimer's disease. The substance suppresses gut bacterial amino acids-shaped neuroinflammation to inhibit Alzheimer’s disease progression. Assistive technologies for dementia patients can help identify relevant information for care and nursing, as well as measurements for clinical interventions. Dementia patients have a high risk of developing delirium, even in the home environment. Therefore, it is necessary to use and further develop multi-disciplinary and systematic detection and prevention strategies. Homecare models for dementia patients with multidisciplinary teams have been established and evaluated and should be expanded. Dementia is the third-leading cause of death in Switzerland. In palliative care for severe dementia, the improvement of quality of life is of primary importance. The goals of the National Dementia Strategy, to increase the quality of life in those affected and to reduce taboos surrounding the disease, are still unrealised. The need for further national and regional engagement in order to implement the different findings of the strategy has largely been acknowledged, and these implementations have become the core tasks of a national dementia platform.

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“…The MSSE (Table 1) scale [12,13] is the first objective clinical tool for the evaluation of suffering level in advanced dementia. The MSSE scale finds extensive use in medical research [14][15][16][17] and practice [18][19][20][21] . The MSSE scale is available in English, Hebrew, Dutch [22] , Germane, Italian, Spanish and Slovenian [23] , and covers 10 items (range 0 -10).…”

Section: Mini Suffering State Examination Scale (Msse)mentioning

confidence: 99%

Aminoff Suffering Syndrome in advanced Alzheimer's disease and end-of-life: First 10 years

Aminoff¹

2017

LHBS

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The Aminoff Suffering Syndrome in advanced Alzheimer disease and endof-life is characterized by a high Mini Suffering State Examination (MSSE) scale score, less than 6 months survival, irreversible and intractable aggravation of suffering and actively dying medical condition until demise. The Aminoff Suffering Syndrome was first defined by us, presented and published 10 years ago in the 10 th International Conference on Alzheimer's disease and Related Disorders (Madrid, 2007). Its diagnosis in end-of-life was performed by measuring the suffering level of patients by evaluating the Mini Suffering State Examination (MSSE) scale score. The treatment of patients with Aminoff Suffering Syndrome at the end of life is a great challenge to medical and nursing personnel. The diagnosis of Aminoff Suffering Syndrome opens new horizons in the approach to anguish at end-of-life and provides a novel method for identifying advanced Alzheimer's disease patients that require immediate palliative treatment.

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

Cited by 7 publications

References 43 publications

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

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

Conference report: dementia research and care and its impact in Switzerland

Aminoff Suffering Syndrome in advanced Alzheimer's disease and end-of-life: First 10 years

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