Supported decision making and person-environment (p-e) fit
The subproject Gerontology aims to identify the country-specific demands and actual conditions governing informed consent procedures in the participating countries, i.e. Germany, Portugal and Spain in clinical dementia research. About 90 people with early stage dementia, and 90 caregivers/legal guardians (all involved in clinical dementia research) will be included. The recruitment strategy to get potential subjects is to contact dementia researchers in Germany, Spain, and Portugal and ask them to share our online-study with their study participants. The online survey is conducted over a period of 6 months. Participants are interviewed in order to gather information on existing informed consent conditions in clinical dementia research. Furthermore, participants are asked to formulate and rate their needs, whereby the emphasis lays on the assessment of person environment fit indices in the domains of spatial and social needs versus existing conditions. Basing on the results enhanced consent procedures will be applied and evaluated in the second phase of the study. Goal of the third phase is to develop and publish interdisciplinary recommendations for informed consent procedures in dementia research together with the subprojects LAW, ETHICS I and ETHICS II.
We have developed an online-survey to ask persons with dementia and caregivers who are involved in dementia research about actual conditions and needs in informed consent procedures