Care and encounter-free periods: Experiences of people with dementia

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 been no scientific examination of the question of how people with dementia experience these periods. However, such knowledge would be highly relevant for healthcare professionals and relatives in order to develop adequate strategies for dealing with care-free time. Based on the fundamental Goffmanian question “What is actually going on here?”, the aim of the study is to reconstruct the care-free and encounter-free time periods of people with dementia. The study is designed as an explorative, sequential methodological pluralistic investigation. The care- and encounter-free periods within the project framework of 36 months will be reconstructed 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 care cultures, practices and orders, the periods will be examined across all phases of dementia. This is done a) in institutional care facilities in which only people with dementia live or b) people with and without dementia live together and c) in the home setting.

In order to do justice to the research interest, the cross-disciplinary and cross-national team is made up of researchers with expertise in nursing science, gerontology, sociology, psychology and ethnography. The research provides starting points for the representative study of care-free and encounter-free times, for the development of diagnostic tools and for the critical examination of possibilities for interruption, for example through the development of action-guiding and goal-oriented interventions.

Aim: The aim of the study is to research and describe the care-free and encounter-free time periods of people with dementia. This is done from the perspective of the people with dementia themselves and from the perspective of professional caregivers and volunteers. The study takes place in nursing homes and in home care, with Switzerland and Germany being compared with each other. The aim is to present a descriptive description of the modes of action and to work out how people with dementia understand time in their living environment. A classification of these understandings of time is to be developed.