JMIR Publications

ABSTRACT

Background:

Persons with dementia spend a large part of the day without care and encounters, often without activity. This has been confirmed by numerous studies. However, no scientific analysis has yet examined how persons with dementia experience these periods. Such knowledge would be highly relevant for health care professionals and relatives to develop adequate strategies for dealing with times without care.

Objective:

Starting from the fundamental Goffmanian question "What is going on here?", our study aims at reconstructing times without care and encounters in persons with dementia. We examine this phenomenon from the perspective of persons with dementia themselves and from the point of view of formal or informal caregivers in the institutional and domiciliary care setting. In these contexts, we compare the situation in Switzerland and Germany. Our intention is to present a descriptive account of the effects and to develop a typology. This typology addresses dementia-affected persons’ lifeworld understandings of time and ways of arranging time.

Methods:

Our study is designed as an explorative, sequential multi-method investigation. We systematically reconstruct times without care and encounters during 35 months with ethnographic methods. Afterwards, we examine the resulting typology by means of a survey. To describe different social and caring cultures, practices and arrangements, we analyze time periods across all phases of dementia. This takes place a) in institutions exclusively caring for persons with dementia, b) in institutions where persons with and without dementia live together, and c) in domiciliary care. For each type of care (a-c), our target is ten intensive case observations. These observations occur in participatory and non-participatory ways. We videotape selected situations and perform situational conversations as well as interviews with persons with dementia and nurses. We analyze data according to grounded theory methodology. Furthermore, we perform a hermeneutic sequence analysis of selected text passages. To interpret videographic material, we conduct a video interaction analysis. In order to obtain complementary information about the newly developed typology, we perform a written survey of around 400 formal and 150 informal caregivers. We summarize the findings of the ethnography and the survey in an overall concept of times without care and encounters in persons with dementia. To fulfil the research interest, our cross-disciplinary and cross-country team comprises researchers with expertise in nursing sciences, gerontology, sociology, psychology, and ethnography.

Results:

This approach allows us to formulate statements about the nature, frequency and prevalence of times without care and encounters across countries and types of care. In this way, we contribute to making visible the lifeworld of persons with dementia.

Conclusions:

Our research offers points of departure for the representative investigation of times without care and encounters, for the development of diagnostic instruments and for dealing critically with possibilities of interruption, e.g., by developing action-guiding and goal-oriented interventions.