Care and encounter-free periods

Methodological plural explorations on the experience of persons with dementia

• Duration: March 2022 - February 2025
• Project leaders: Prof. Dr. Thomas Beer, Prof. Dr. Helma Bleses, Prof. Dr. Matthias Kliegel, Prof. Dr. Peter König, Prof. Dr. Sabina Misoch
• Project partners: Univ. Prof. Mag. Dr. Hanna Mayer, Prof. Dr. Gabriele Meyer
• Funding Organisation: Swiss National Science Foundation (SNF)/ German Research Foundation (DFG)

Background: People with dementia spend most of the day without care and contact, and usually without activity. This has been proven by numerous studies. Nevertheless, there has not yet been any scientific examination of the question of how persons with dementia experience these periods of time. Such knowledge would, however, be highly relevant for health professionals and relatives in order to be able to develop adequate strategies for dealing with carefree time. Based on the fundamental Goffmanian question "What's going on here?", the aim of the study is to reconstruct the care-free and encounter-free periods of persons with dementia. The study is designed as an explorative, sequential methodological plural investigation. The periods without care and contact will be reconstructed within the project framework of 36 months using ethnographic methods and the resulting typology will be examined with the help of a survey. In order to be able to describe different social and caregiving cultures, practices and orders, the periods will be examined across dementia phases. This will be done a) in institutional care settings where only persons with dementia live or b) persons with and without dementia live together as well as c) in the home setting.

In order to do justice to the research interest, the cross-disciplinary and cross-national team is composed of researchers with expertise in nursing science, gerontology, sociology, psychology and ethnography. The research offers starting points for the representative investigation of care-free and encounter-free times, for the development of diagnostic instruments as well as for the critical examination of possibilities of interruption, for example through action-guiding and goal-oriented intervention development.

Aim: The aim of the study is to explore and describe the care and encounter-free periods of persons with dementia. This is done from the perspective of the persons with dementia themselves and from the perspective of professional carers and volunteers. The study takes place in nursing homes and in home care, comparing Switzerland and Germany. The aim is to present a descriptive presentation of the modes of action and to work out which understandings of time people with dementia have in their living environment. A classification of these understandings of time is to be developed.