The ZULIDAD Round Table

The ZULIDAD (Zurich Life and Death with Advanced Dementia) Round Table is a participatory research and development project in the field of advanced dementia and essentially pursues two key aims. One is to ensure high levels of relevance to practice in the empirical ZULIDAD studies. The other is to transfer new findings into practice. The Round Table currently has 33 highly motivated members who not only follow the progress of the ZULIDAD studies, but are also closely working together on producing a guide for relatives of dementia patients at the end of their life.

Background

One of the key issues of our time, dementia was the third most common cause of death for people over the age of 85 in Switzerland in 2013 (Federal Office of Statistics, 2015). However, how those affected and their relatives experience the last phase of life has so far been hardly researched in Switzerland. The ZULIDAD study is hoping to find answers to some of the questions arising from death with dementia. The study is supported by the Swiss National Science Foundation (National Research Programme NFP 67 “End of Life”) and is made up of three subprojects: ZULIDAD-A, ZULIDAD-B and the Round Table ZULIDAD. In ZULIDAD-A, a comprehensive RAI-Dataset (Nursing documentation data which is routinely recorded in many Swiss nursing homes) is analyzed. In ZULIDAD-B, relatives and care workers of 126 residents at 11 care facilities in Zurich and the surrounding areas, are surveyed about the health and condition of the residents, every 3 months, for 3 years.

The ZULIDAD Round Table accompanies these empirical studies as an instrument of participative research. The center for gerontology of the University of Zurich, which has successfully conducted many such projects, describes participative research as the equal cooperation between the relevant stakeholders, throughout the entire research process.

Goals

The key concern of the ZULIDAD Round Table is to involve the relevant stakeholders in the research process in order to raise the practice relevance of the research and to promote a swift flow of the results into practice. Although not new, the idea of involving stakeholders in research projects is not well established in age research and has therefore been supported from various sides, for example in the Swiss Federal Office of Public Health's Strategy on Dementia 2013 - 2017 (FOPH, 2013). 

Round Table Participants

The ZULIDAD Round Table has 33 members (as of November 2016). They are divided into three groups, all made up of relatives, practitioners and researchers. The equal distribution of the members among the three groups ensures that the views of the three groups are equally heard.

Collaboration in Practice

The Round Table met for the first time in spring 2013. Since then, eleven meetings have been held and four more are planned for the beginning of 2018. Depending on the project phase, the meetings take place around three times a year, each lasting four hours. The structure of the individual sessions is adapted to the respective content. Common to all meetings is a preparatory meeting held in advance to set the actual contents for the main meeting. All members are invited to attend these preparatory meetings. In this way, participatory collaboration is not restricted simply to the scope of the regular meetings, but is expanded to include the shaping of each meeting’s agenda and procedure by the participants themselves. Each meeting is recorded in detail, ensuring that all members are always equally updated.

Looking back

After eleven meetings and a considerable number of chapters to the guide developed, it is not only clear that the model of participatory collaboration is backed by numerous sides, but also a feasible procedure for this purpose. As a result, the ZULIDAD Round Table can be said to be pioneering for the science of aging and beyond.

Project participants:

Study Leads:

Dr. Stefanie Eicher & Dr. Nathan Theill, (Center for Gerontology and URPP “Dynamics of Healthy Aging”, UZH)

Project manager:

• PD Dr. med. Henrike Wolf (University Hospital of Psychiatry Zurich)
• Dr. med. Florian Riese (University Hospital of Psychiatry Zurich)
• Prof. Dr. Mike Martin (Center for Gerontology, University of Zurich)
• PD Dr. med. Albert Wettstein (Center for Gerontology, University of Zurich)
• Prof. Dr. Christoph Hock (University Hospital of Psychiatry Zurich)
• Heike Geschwindner (Care Centers in the City of Zurich)

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