A Participatory Research Project
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.
One of the key issues of our time, dementia was the third most common cause of death for the over 85 years in Switzerland in 2013 (Federal Office of Statistics, 2015). The ZULIDAD study is hoping to find answers to some of the questions arising from death with dementia. The study is funded by the Swiss National Fund (National Research Program NFP 67 Lebensende) and comprises three parts: ZULIDAD-A, ZULIDAD-B and ZULIDAD Round Table. In the ZULIDAD-A study, a comprehensive set of RAI data (documented care data that is routinely recorded in many Swiss nursing homes) are retrospectively analyzed. In the ZULIDAD-B study, family members and caregivers of 126 nursing home residents from 11 homes in and around Zurich are surveyed on a quarterly basis for a period of three years with regard to the health and well-being of the resident.
The ZULIDAD Round Table observes the two empirical investigations and is recognized as an instrument of participatory research. At the UZH Center of Gerontology, which has successfully completed several participatory projects, participatory research is defined as a form of collaboration in which all relevant stakeholders enjoy equal rights during the entire research process.
Aims of the ZULIDAD Round Table
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, e.g. in the National Dementia Strategy 2013-2017 (BAG, 2013). The ZULIDAD Round Table can be said to have a pioneering dimension.
Round Table Participants
The ZULIDAD Round Table has 33 members (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 definition of each meeting’s agenda and procedure. Each meeting is recorded in detail, ensuring that all members are always equally updated.
Dr. Stefanie Eicher & Dr. Nathan Theill, (Center for Gerontology and URPP Dynamics of Healthy Aging, UZH)