Exploring the Experiences of Times Without Care and Encounters in Persons With Dementia in the Swiss and German Nursing Home and Domiciliary Care Settings: Protocol for an Ethnographic Multimethods Study.

Abstract

Background: Persons with dementia spend a large part of the day without care and encounters, often without activity, as confirmed by numerous studies. However, no scientific analysis has 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: We aim to reconstruct times without care and encounters in persons with dementia in the nursing home and domiciliary care settings and develop a typology. This typology will address the lifeworld understandings of time and the ways of arranging the time of persons with dementia.

Methods: Our study is designed as an explorative, sequential multimethods investigation. We aim to systematically reconstruct times without care and encounters over a period of 36 months using ethnographic methods. Afterward, we will examine the resulting typology using a survey. To describe different social and caring cultures, practices, and arrangements, we will analyze time periods across all phases of dementia in (1) institutions exclusively caring for persons with dementia, (2) institutions where persons with dementia and those without live together, and (3) domiciliary care. For each type of care, our target is 10 intensive case observations. These observations will occur in both participatory and nonparticipatory ways. We video record selected situations and conduct situational conversations and interviews with persons with dementia and nurses. We are aiming for a minimum sample of 30 persons with dementia plus their caregivers (ie, relatives of people with dementia and professional caregivers). We will analyze data according to grounded theory methodology. Furthermore, we will perform a hermeneutic sequence analysis of selected text passages. To interpret the video material, we will conduct a video interaction analysis. To obtain complementary information about the newly developed typology, we will survey approximately 400 formal and 150 informal caregivers. We will summarize the ethnography and survey findings into an overall concept of times without care and encounters in persons with dementia. To fulfill the research objectives, our cross-disciplinary and cross-country team comprises researchers with expertise in nursing sciences, gerontology, sociology, psychology, and ethnography.

Results: Our approach allows formulating statements about the nature, frequency, and prevalence of times without care and encounters in people with dementia across countries and types of care. Thus, we will contribute to making visible the lifeworld of persons with dementia. Our study commenced in March 2022 and will conclude in May 2025. The results are expected to be published in the fall of 2025.

Conclusions: Our research offers points of departure for the representative investigation of times without care and encounters in persons with dementia, for the development of diagnostic instruments, and for dealing critically with possibilities of interruption (eg, by developing targeted interventions).

International registered report identifier (irrid): DERR1-10.2196/58190.