Exploring experiences of times without care and encounters in dementia: protocol for a living and adaptive evidence map

IntroductionIndividuals with dementia spend most of the day without care, without encounters, and usually without activity. Although this has been proven in studies, there is a knowledge gap on how individuals with dementia experience these periods of time. Such knowledge would be highly relevant for health professionals and relatives to develop adequate strategies for dealing with these periods of time. The FreiZeit study aims to reconstruct periods of time without care and encounters from the perspective of individuals with dementia and formal and informal carers. The specific objective of this review is to provide a continuously updated overview of the topical evidence that may be used to guide data synthesis and interpretation within the FreiZeit study.Methods and analysisWe conduct a living evidence map, based on a comprehensive systematic literature search in MEDLINE/PubMed, CINAHL, PsycINFO/Ovid and Web of Science Core Collection, citation-based searches and web searches. We include studies on times without care and encounters of individuals with dementia from the perspective of individuals with dementia themselves and formal or informal caregivers of any observational study design that were conducted in the institutional and domestic long-term care setting and published as journal article in English, French or German language without any restriction of the publication year. One reviewer screens titles, abstracts and full texts and extracts data. Key characteristics and results of the included studies are charted in a tabular format. The searches will be run and continuously updated throughout the duration of the overarching FreiZeit study (every 6 months for 2 years from 2023 to 2025).Ethics and disseminationEthics approval is not required for this evidence map. We disseminate our findings via journal articles and conference proceedings as well as other formats.Registration detailsThis review protocol is uploaded on Open Science Framework (OSF; DOI 10.17605/OSF.IO/GDYZ9).