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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 ai...
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Background:
In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dement...
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...
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...
Purpose
Current evidence on the care-delivering process and the intensity of treatment at the end-of-life of cancer patients is limited and remains unclear. Our objective was to examine the care-delivering processes in health care during the last months of life with real-life data of Swiss cancer patients.
Patients and methods
The study population...
Citations
... 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 [29]. 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). ...
... 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 [29]. 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 [30]. ...
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.
... 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). ...
... 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). ...
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.
... 30,31,33,48 The remaining three studies used mixed-methods 10,41 and quasi-experimental designs. 58 Studies were undertaken in ten different countries: 15 studies in the United States of America (USA), [36][37][38][40][41][42][45][46][47][48][49][51][52][53][54] five in the UK, 43,55,56,59,60 four in Israel, [30][31][32][33] two each in Italy 35,44 and Australia, 29,34 and one each in Switzerland, 39 Germany, 57 Netherlands, 10 Canada 58 and Japan. 50 ...
... Four care settings for people living with dementia were identified from the 33 studies (Table 1). Most studies were conducted in the nursing home setting (21 studies), 29,[34][35][36][37][38][39][40][41][42][43][44][45][48][49][50][51]53,54,57,58 followed by the hospital setting (7 studies). [30][31][32][33]47,52,55 Hospice and home settings were the focus only in one study each. ...
... 30,31,33,48 The remaining three studies used mixed-methods 10,41 and quasi-experimental designs. 58 Studies were undertaken in ten different countries: 15 studies in the United States of America (USA), [36][37][38][40][41][42][45][46][47][48][49][51][52][53][54] five in the UK, 43,55,56,59,60 four in Israel, [30][31][32][33] two each in Italy 35,44 and Australia, 29,34 and one each in Switzerland, 39 Germany, 57 Netherlands, 10 Canada 58 and Japan. 50 ...
... Four care settings for people living with dementia were identified from the 33 studies (Table 1). Most studies were conducted in the nursing home setting (21 studies), 29,[34][35][36][37][38][39][40][41][42][43][44][45][48][49][50][51]53,54,57,58 followed by the hospital setting (7 studies). [30][31][32][33]47,52,55 Hospice and home settings were the focus only in one study each. ...
Background
Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia.
Aim
To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia.
Design
Systematic review and narrative synthesis.
Data Sources
Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia.
Results
Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life.
Conclusion
End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.
... 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]. ...
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.
... Worldwide -and particularly in the Netherlands and Great Britain -several research groups have been focusing on pal- liative care in dementia. The intersection of palliative care and late-onset dementia (LOD) has been addressed in nu- merous studies, e.g. the Dutch End of Life in Dementia (DEOLD) study [4], the Implementation of quality indica- tors in palliative care study (IMPACT) [5] and the Z?rich Life and Death with Advanced Dementia (ZULIDAD) study [6]. These studies provide insights into the symptoms and findings observed in advanced and terminal stages of de- mentia, treatment options, healthcare conditions, quality of life and death, patients' needs, care goals, reasons and cir- cumstances of death, end-of-life outcomes, attitudes of nursing staff and doctors as well as the needs and problems of relatives, formal and informal caregivers. ...
Background:
Scientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have focused on persons with dementia in long term care (LTC) facilities but have neglected persons that are cared for at home. We hypothesize that unmet care needs exist in advanced and terminal stages of YOD and LOD and that they differ between YOD and LOD.
Methods/design:
The EPYLOGE-study (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) aims to prospectively assess and survey 200 persons with YOD and LOD in advanced stages who are cared for in LTC facilities and at home. Furthermore, EPYLOGE aims to investigate the circumstances of death of 100 persons with YOD and LOD. This includes 1) describing symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers' needs and satisfaction; 2) comparing YOD and LOD regarding these factors; 3) developing expert-consensus recommendations derived from the study results for the improvement and implementation of strategies and interventions for palliative care provision; 4) and communicating the recommendations nationally and internationally in order to improve and adapt guidelines, to change current practice and to give a basis and perspectives for future research projects. The results will also be communicated to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians.
Discussion:
EPYLOGE is the first study in Germany that assesses palliative care and end-of-life issues in dementia. Furthermore, it is the first study internationally that focuses on the specific palliative care situation of persons with YOD and their families. EPYLOGE serves as a basis for the improvement of palliative care in dementia.
Trial registration:
The study is registered in ClinicalTrials.gov ( NCT03364179 ; Registered: 6. December 2017.
... However, evidence about the clinical course of Swiss patients is lacking. The Zurich Life and Death with Advanced Dementia (ZULIDAD) study will be the first to describe the clinical course and quality of life and dying of residents with advanced dementia in Switzerland (Eicher et al., 2016). ZULIDAD is a prospective cohort study conducted in 11 nursing homes in the greater Zurich area that followed triads of residents with advanced dementia, their relatives, and primary nurses. ...
... 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). ...
The Aminoff Suffering Syndrome in advanced Alzheimer disease and end-of-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 10th 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.
The life of patients with end-stage dementia is filled with grief, secretion and stench, suppuration and wounds, crying, screaming or silent pain. This appears to be the natural and essential path of end-stage disease and aging. Its diagnosis could reduce the suffering of patients at the end of life by adequate medical and nursing care. The MSSE is the first objective clinical tool for the evaluation of suffering levels in advanced dementia. The Aminoff Suffering Syndrome in advanced Alzheimer's disease and end-of-life is characterized by a high Mini Suffering State Examination (MSSE) scale score, less than 6 months of 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 at the 10th 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. A high MSSE scale score with a range of 7 - 10 indicates a high level of suffering and reflects the severity of the medical condition in advanced dementia. 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 who require immediate palliative treatment. Looking ahead, the authors suggest that all medical researchers involved in geriatric care perform experimental prospective studies in their respective clinical settings.
Keywords: Advanced Alzheimer disease end of life Aminoff suffering syndrome relief of suffering units palliative care
Réalisée à la demande de l’Inspection générale des affaires sociales (Igas) dans le cadre de son évaluation du plan « Soins palliatifs 2015-2018 »1, l’objectif de cette bibliographie est de recenser des sources d’information (ouvrages, rapports, articles scientifiques, littérature grise, sites institutionnels…) dans le domaine des soins palliatifs pour la période allant de 2013 à février 2019 avec quelques publications clefs antérieures à ces dates.
Le périmètre géographique retenu englobe la France, l’Europe (Allemagne, Belgique, Pays-Bas, Royaume-Uni, Suisse) ainsi que les États-Unis et le Canada.
This synthesis is available on Irdes' website : https://www.irdes.fr/documentation/syntheses/les-soins-palliatifs-en-france-et-a-l-etranger.pdf