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

BMC Palliative Care

Study Protocol

Albert Wettstein¹  Caroline Moor¹  Heike Geschwindner²  Christoph Hock³  Henrike Wolf³  Gabriela Bieri-Brüning⁴  Stefanie Eicher⁵  Mike Martin⁶  Nathan Theill⁷  Florian Riese⁸ 

[1] Center for Gerontology, University of Zurich, Pestalozzistrasse 24, 8032, Zurich, Switzerland;City of Zurich Nursing Homes, Walchestrasse 31, 8021, Zurich, Switzerland;Division of Psychiatry Research and Psychogeriatric Medicine, University of Zurich, Lenggstr. 31, 8032, Zurich, Switzerland;Municipal Physician Service Zurich, Walchestrasse 31, 8021, Zurich, Switzerland;University Research Priority Program “Dynamics of Healthy Aging”, University of Zurich, Andreasstrasse 15, 8050, Zurich, Switzerland;Center for Gerontology, University of Zurich, Pestalozzistrasse 24, 8032, Zurich, Switzerland;University Research Priority Program “Dynamics of Healthy Aging”, University of Zurich, Andreasstrasse 15, 8050, Zurich, Switzerland;Center for Gerontology, University of Zurich, Pestalozzistrasse 24, 8032, Zurich, Switzerland;Department of Psychology, University of Zurich, Binzmuehlestrasse 14, 8050, Zurich, Switzerland;University Research Priority Program “Dynamics of Healthy Aging”, University of Zurich, Andreasstrasse 15, 8050, Zurich, Switzerland;Center for Gerontology, University of Zurich, Pestalozzistrasse 24, 8032, Zurich, Switzerland;Division of Psychiatry Research and Psychogeriatric Medicine, University of Zurich, Lenggstr. 31, 8032, Zurich, Switzerland;University Research Priority Program “Dynamics of Healthy Aging”, University of Zurich, Andreasstrasse 15, 8050, Zurich, Switzerland;Division of Psychiatry Research and Psychogeriatric Medicine, University of Zurich, Lenggstr. 31, 8032, Zurich, Switzerland;

关键词: Advanced dementia;    Palliative care;    End-of-life care;    Nursing home;    Satisfaction with care;    Quality of care;    Qquality of life;    Dying;    Terminal phase;   

DOI  :  10.1186/s12904-016-0151-2

 received in 2016-04-21, accepted in 2016-08-15,  发布年份 2016

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© The Author(s). 2016