The diagnosis and progression of dementia are associated with lifeworld crises because the patterns of interpretation and action increasingly fail, and there is uncertainty and a lack of orientation [1,2]. Such crises arise and persist in the working and care worlds located in domestic-familial and institutional settings. For the most part, these crises receive political and social acceptance. Isolation, loneliness, helplessness, excessive demands, and despair, as well as the associated severe restrictions on basic rights and liberty, are characteristic of the lifeworld contexts experienced by persons with dementia and their caregivers [3-6].

Persons with dementia and their caregivers navigate a marginalized world characterized by the collapse of the structures of help, care, support, and relationships. The associated ethical conflicts and dilemmas are politicized and discussed in society. However, this does not change the affected persons’ experience of crisis [7-12].

The issue of dementia has played an enormous role in the political, social, and scientific debate for several years. This is now reflected in the German-speaking population. As the German Dementia Barometer 2018 shows, the majority of the population feels well informed about dementia and believes that there are good opportunities for supporting persons with dementia [13].

However, at the same time, a marginalization of the dementia phenomenon is evident at various levels. The review by Lara et al [14] indicates the interrelation between subjectively experienced loneliness and the risk of developing dementia. According to the findings, people with a subjective feeling of marginalization are particularly affected by dementia. They feel socially excluded even before they are diagnosed. By contrast, the pathologization or stigmatization of persons with dementia as people that suffer from dementia increases their marginalization. Due to their varying degrees of loss of cognitive and communicative abilities, persons with dementia are less and less involved in social life in the sense of social participation. Caring for persons with dementia increasingly takes place in a social protective sphere [15] (eg, in a familial, dyadic care dependency or in a care facility). The social, restrictive area of protection results predominantly from a caring motivation or a benevolent compulsion” [16]. Country-specific differences could play a role here: in Switzerland, caring for and supporting persons with dementia in the institutional setting predominantly occurs in so-called protected and secured living areas [17,18]. Unlike in Germany, these protected living areas are usually isolated from other normal living areas. As a result, persons with dementia become even more fixed in place, immobile, and therefore isolated agents at the margin [19-21]. Persons with dementia enter a downward spiral due to inadequate cognitive, emotional, and sensory stimulation. This has a negative impact—on the course of dementia; the development of challenging behavior; the way of shaping relationships with their environment; and, above all, their physical, cognitive, and emotional states [22]. Almost on the basis of a conceptual justification and thus in a socially legitimized way, persons with dementia are isolated and immobilized [21,23]. This imposed solitude seems to support the production and potentiation of care dependency in persons with dementia [24,25]. The scientific and social discourse on this closed-door policy takes place internationally [17,26-29].

There are numerous empirical indications that persons with dementia in institutional care settings experience long periods of boredom and inactivity, along with associated phases of loneliness [21,30-36]. In addition, observational studies document the lack of activation of thoughts or behaviors and involvement of persons with dementia. Accordingly, during the majority of the observation periods, persons with dementia were found sitting alone, being inactive, resting, dozing, sleeping, or sitting or lying in front of the television set [35,37-39]. Persons with dementia spend an average of 5 hours a day asleep [40].

It should be noted that activity programs in inpatient care settings only take place to a limited extent [41]. Theurer et al [33] confirm institutionalized inactivity in their study on physical activity in institutional long-term care. Two observational studies [42,43] examined the activities of persons with dementia during the day in different long-term care settings. Both studies found significantly more activity and social interaction in specialized institutions. However, also in these settings, persons with dementia seem to spend a relatively large amount of time in nonpurposeful activity (eg, tapping on a table, rubbing hands for no reason, picking at clothing or objects, wandering, and mumbling) or inactivity. These findings are based exclusively on quantitative observational data and represent the researchers’ perspective. As a result, it was not possible to draw conclusions about how people with dementia themselves perceive these periods of time. Therefore, there may be a difference in perspective [44].

In a Swedish ethnographic study addressing the situation in nursing homes, Harnett [45] described these periods of time as “respite spaces.” A large part of the life of persons with dementia seems to consist of respite spaces. During these periods of time, persons with dementia neither communicate nor interact with nurses. They are not involved in interventions or routine processes. Harnett [45] advocated intensive investigation of these respite spaces to understand what they mean for people with dementia and their caregivers. Harnett [45] observed that persons with dementia not only passively submit to institutional events but also actively shape them—by using communicative strategies and entering into contact with each other. In respite spaces, persons with dementia seem to construct an intersubjectively shared reality of life. However, they usually do not organize their own daily routines—they see nurses as responsible for the social organization of a living unit [45]. In community rooms, they try to fulfill the shared expectation of sitting still and taking care of their own things [46]. By contrast, nurses’ practices seem to be directed at prompting persons with dementia to sit as still as possible and mind their own business [46,47]. Other reasons for the low level of activity and involvement may be physical impairments, obstructive architecture (eg, large, noisy community rooms), and unfavorable design of the living environment. Limited time resources or a shortage of (nursing) staff might also play a role [48,49]. Together, these factors limit opportunities and choices to participate in activities and social relationships that persons with dementia consider important [50-52].

According to an explorative, Scandinavian study based on qualitative interviews with persons with dementia and nurses, persons with dementia wish to be more involved in activities and relationships. This is important for them to lead a dignified life [53]. By contrast, nurses often consider persons with dementia as inactive and unmotivated [51]. For their part, persons with dementia seek to engage in individual and group activities. These activities are important to them [53] and help them to live a meaningful and fulfilling life [54]. In addition, persons with dementia can experience and coconstruct their identity in activities that are meaningful to them [55]. Relationships characterized by respect and goodwill, in which they feel heard, understood, and accepted, are important for them [56,57]. In the domiciliary care setting, family caregivers also emphasize the importance of routines and sense-giving activities to maintain the continuity and stability of the care situation [58].

In times without care and encounters, persons with dementia may strive for activities that resemble to those generally described as leisure activities. Studies on the importance of leisure for persons with dementia are congruent with the sociopsychological concept of leisure [59]. According to Prahl [60], leisure has become a dominant area of modern societies. It refers to people’s free time [60]. Leisure varies across social groups in terms of quantity and quality. For persons with dementia, access to leisure activities understood in this way is often difficult. They experience leisure time in increasing dependence on family members or other people. As a result, the leisure time of persons with dementia (as well as that of their informal caregivers) is condensed in terms of time and space.

However, engaging in or participating in activities considered leisure activities can have a positive impact on the well-being of persons with dementia and their families [59]. Leisure activities can be an opportunity for self-fulfillment. They allow persons with dementia to “be me, be with, make a difference, seek freedom, find balance, grow and develop and have fun” [61]. In relation to persons with advanced dementia, the literature does not generally refer to leisure activities but to meaningful activities. However, for the most part, meaningful activities coincide with leisure activities, as shown by a synthesis of qualitative studies on the perspective of persons with dementia regarding meaningful activities [62]. In a British grounded theory study, family caregivers emphasize the need to constantly reassess and adapt the goals, content, and types of activities that are meaningful for persons with dementia [58].

The authors of a meta-ethnography on the meaningful activities of persons with dementia underline the relevance of meaningful activities for a fulfilling life for persons with dementia [54]. They point out that these activities evolve and change with a person’s identity [54]. Supporting meaningful activities for persons with dementia seems to be challenging for nurses. Nurses consider those activities as essential that reflect the interests of the person with dementia; activities should be personalized and fit into the social or physical environment. However, they face certain barriers preventing the introduction and implementation of meaningful activities: structural (barriers related to maintaining organizational routines), personal (barriers arising from insufficient specific knowledge of activities, roles, and habits before taking up employment in a nursing home), and interprofessional (barriers stemming from a lack of awareness of meaningful activities among professionals). Nurses also identify a low awareness of meaningful activities [63,64].

Times without care and encounters can also have a negative impact. Low levels of physical or cognitive activity may have a long-term influence on the progression of cognitive impairment and mortality in persons with dementia [65,66]. During periods of low social involvement, Cohen-Mansfield et al [23] found an increase in challenging behaviors, such as agitation, in persons with dementia, while Cohen-Mansfield and Golander [67] noted a rise in hallucinations [67]. It can be assumed that behind challenging behaviors are unmet needs—expressed in the form of behaviors [68]. Unmet needs arise from a lack of reciprocity of perspective between people with dementia and their (social) environment [69,70]. In their findings, Cohen-Mansfield et al [34] showed three main unmet needs of persons with dementia exhibiting challenging behaviors: (1) boredom or sensory deprivation, (2) loneliness or a lack of social interaction, and (3) the need for meaningful activities.

To obtain an idea of times without care in persons with dementia, it seems necessary to examine the structures of these periods of time. According to the phenomenological or pseudophenomenological findings of Honer [71], the lifeworld understanding of time in persons with dementia is characterized by confusion between the subjective and intersubjective perceptions of temporal structures. Persons without dementia can switch their thoughts between worldtime-related present, past, and future. By contrast, persons with dementia confuse the worldtime-related past with the present, which affects their perception of here-and-now-reality. The comments by Honer [71] indicate that the temporal structures of the lifeworld of persons with dementia differ from those of persons without dementia. In addition, persons with dementia experience time subjectively differently [71].

Dealing with times without care and encounters requires an exploration of their origins, subjective experiences, and the subjective attribution of meaning. This applies particularly to those times that are intersubjectively described as long periods of boredom and as supposedly destructive. These are conditional social categories of time, whose effects are described from a rather objective perspective. Little is known about their genesis [72], temporal perception [73,74], and meaning for persons with dementia [75,76]—and for formal or informal caregivers—as well as their relation to the past and the future [77].

There is a need to investigate these times and to examine how persons with dementia perceive them. It is not known how to interpret times without care and encounters from the perspective of persons with dementia. This knowledge is particularly important, given the different definitions of the term need for care in the assessment of care and support conditions in Germany and Switzerland. In the Swiss and German care systems, different instruments are used to identify care needs and record care and support times. These instruments refer to national definitions of the need for care. While the German concept is based on the degree of independence and abilities of the care recipient, the Swiss concept is focused on their support needs [78].

These conceptual logics result in different care services. One can assume that these conceptual logics influence the existence and experience of times without care and encounters [79,80]. Nevertheless, it would be premature to assume that these periods are generally undesirable, empty times that are frequently associated with distressing experiences. The periods could also be considered relaxing off time, allowing for healing contemplation in a condensed time—in the sense of time for oneself [42].

Times without care and encounters in persons with dementia are the focus of our explorative and sequentially designed multimethods ethnographic study [81-84]. We examine these periods of time across dementia phases in different institutional as well as domiciliary care arrangements in Switzerland and Germany. We want to clarify how people with dementia perceive and experience these times. It is unclear whether these times represent meaningfully definable periods of time—in the sense of periods of action—for people with dementia. We would like to close this research gap by investigating the way in which people with dementia act (or do not act) during these times without care and encounters.

The research objective of the study is to ethnographically reconstruct times without care and encounters from the perspective of persons with dementia themselves and from the point of view of formal or informal caregivers. For this purpose, we apply ethnographic methods [85-87].

We are thus exploring the different small social lifeworlds [88,89] of people with dementia.

In doing so, we investigate how people with dementia experience times without care and encounters in their respective lifeworlds. We are interested in investigating how people with dementia act in these times and what strategies they use to deal with these times.

These explorations deal with not only foreign world experiences but also familiar everyday phenomena. We therefore orientate ourselves to the methodological considerations of Honer [71] on lifeworld-analytical ethnography. Hitzler and Eisewicht [86] have developed these considerations further. In addition, focused ethnography according to Knoblauch [85] serves as guidance. Both ethnographic strands are methodologically pluralistic and presuppose reflexivity in the research process [90].

Lifeworld-analytical ethnography refers decidedly [86] to the mundane-phenomenological approaches of lifeworld analysis [91]. Therefore, we relate ourselves, among others, to the reflexive attempt of pseudophenomenology realized by Honer [71] for describing “demential world experiences”. Due to the cognitive limitations of persons with dementia, dementia-related world experience as a research subject is associated with considerable validity problems. Thus, we try to adopt a naïve point of view in the analysis. We attribute a pseudonatural status to the respective situations [92].

Furthermore, we conduct a supplementary survey to validate the interpretative typology developed from the ethnographic material. Specifically, we examine the provisions, regulations, and associated dimensions of the phenomenon of times without care and encounters in persons with dementia. With the survey, we also want to create a complementary information base. We hope to obtain additional information on the frequency, duration, and effects of times without care and encounters. This occurs particularly against the background of different national care systems, institutional and domiciliary arrangements, types of organizations, grade-mix specifications, and staffing principles for nursing homes [48,93,94].

With regard to the so far scarcely researched times without care and encounters, the fundamental question posed by Goffman [95] arises: “What is going on here?” Do persons with dementia address these time periods? If so, how do they talk about them? How do they experience and interpret these times? How do formal or informal caregivers experience and interpret these periods?

We are interested in exploring (across disciplines) how these periods of times without care and encounters are described (1) from the perspective of persons with dementia and (2) from the point of view of their formal or informal caregivers; we are also interested in (3) whether and how persons with dementia “appresent” (in the phenomenological sense) [96,97] these periods of time and how these times affect persons with dementia.

With regard to the individual perspectives, we explore the aspects outlined in Textbox 1.

We are guided by a hermeneutic sociology of knowledge that is based on the fundamental assumptions of social constructivism. According to this perspective, social reality is constructed by the everyday actors themselves (ie, in this case, the person with dementia). Our aim is therefore to reconstruct the construction of periods of care and those without care of people with dementia and translate them into scientific “second-order constructions” [98].

The project is scheduled to last 36 months. The work packages proceed partly in parallel, although mostly at different times and always in interdisciplinary dialogue. We interrelate the results of this work in an ongoing, reciprocal process and then gradually integrate them [99,100].

To do justice to the research interest, we organize the project on an interdisciplinary and multiprofessional basis. Of particular interest is the transnational use of the respective competence profiles, which are closely linked to the research questions. Expertise in the fields of nursing science, gerontology, sociology, and ethnography is located at the Eastern Switzerland University of Applied Sciences (Switzerland), the Fulda University of Applied Sciences (Germany), and the University of Applied Sciences Furtwangen (Germany). Expertise in cognitive psychology is located at the University of Geneva (Switzerland).

The cooperation between different sites and professions seems extremely useful and synergetic. It allows us to combine methodological competences for sociological, psychological, and practical nursing issues with expert knowledge concerning interaction-enabled and communicative action. In addition, the transnational research consortium can address national and international realities and relevancies as well as differences and similarities with regard to the questions posed.

Our research teams at the Eastern Switzerland University of Applied Sciences, University of Applied Sciences Fulda, and University of Applied Sciences Furtwangen are focusing on the ethnographic exploration of times without care and encounters on site. Our research team at the University of Geneva is focusing on the cognitive psychological parameters and is involved in the interdisciplinary and transnational fieldwork as well as in the survey. The respective analyses take place across locations and countries.

A combination of ethnographic observation and standardized survey procedures forms an adequate methodological approach to answer the research questions [101]. After the project installation, we explore the structures and dimensions of the lifeworld texture of time to appropriately reconstruct times without care and encounters in persons with dementia (Figure 1).

Ethics approval was granted by the responsible ethics committees (Switzerland: Ethics Committee of Eastern Switzerland [BASEC 2021-02150 and EKOS 21/179]; Germany: Ethics Committee of the German Society of Nursing Science: 21-009, BL 1787/1-1, and KO 5965/2-1).

Participation in the survey is voluntary for all participants (persons with dementia as well as informal and formal caregivers). We ensure that all participants receive comprehensive and target group–specific information. The project team is aware that persons with dementia are individuals considered potentially (highly) vulnerable [102]. Inclusion in the sample only occurs if it is possible to obtain a declaration of consent from authorized and legal representatives. However, if it is obvious that a person with dementia refuses to participate in the research project, we respect this—regardless of their legal representatives’ possible consent [79]. The design of the entire study and the proceedings ensure that participants face no exceptional risks. Participation takes place on the basis of ongoing consent [103,104]. All persons involved can withdraw from the project at any time. They can interrupt or cancel an observation. The designated research assistants have proven expertise in nursing and nursing science. They also have several years of research experience with persons affected by dementia. Therefore, they are able to pay sensitive attention to verbal and nonverbal signs of refusal or vegetative signs that may necessitate an immediate interruption or cancellation of the observation, interview, or video recording.

After the video recording, we review the footage with the persons with dementia and with their authorized representatives to confirm or revoke the previously granted release. However, our experience in previous projects shows that persons with dementia and their relatives use this option only occasionally—for various reasons.

In our view, it would be ethically unacceptable to pressure people to participate (and thus not respect their autonomy) or to withhold recordings from them.

It is crucial to ensure that the persons in question are aware of their option to codecide, to participate, and to access their data at any time—even later if they did not do so at an earlier stage. Being aware of the problems associated with videography involving persons considered (highly) vulnerable, we conduct prospective and retrospective ethical case discussions on the targeted video recordings. This occurs with the aim of ascertaining the presumed and situational will of the person with dementia and of complying with this will.

Against the background of (potential) vulnerability, we pay equal attention to providing comprehensive information to relatives about the voluntary nature of participation, the data collection methods, data protection, data analysis, data use, and data backup or archiving, as well as about the possibility of withdrawing consent and release.

The persons responsible for the project and the research assistants have many years of experience in qualitative or interpretative and quantitative research. They are also experienced in the care and support of persons with dementia. To achieve the necessary intersubjectivity, we discuss and analyze all data in the interdisciplinary and cross-location team. For this purpose, we conduct ongoing interpretation meetings and workshops. We document all interpretation sessions and workshops, transcribe them into extracts, and compile them into a protocol.

Two nursing scientists advise and support the research team: Prof Dr Gabriele Meyer (Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Germany) and Prof Dr Hanna Mayer (Karl Landsteiner University of Health Sciences, Krems, Austria). Both have proven expertise in the field of dementia care research.

The ethnographic exploration and identification of times without care and encounters involves a close observation of these periods. We also observe periods that immediately precede and follow those without care and encounters. To capture the behaviors and strategies of persons with dementia in these periods of time in a methodologically sound way, it is necessary to (1) observe them both in a participatory and nonparticipatory manner, (2) video record them, and (3) talk to persons with dementia or their caregivers. This involves situational conversations and follow-up qualitative interviews.

To validate the developed typology and to obtain complementary information on times without care and encounters, we subsequently conduct a standardized survey using a self-developed instrument (refer to the Detailed Methodological Outline subsection). Formal and informal caregivers take part in this survey, and we analyze their written statements (refer to the Detailed Methodological Outline subsection). Afterward, we synthesize the knowledge generated, and the associated combination of qualitative and quantitative research results in an overall model of times without care and encounters in persons with dementia (refer to the Detailed Methodological Outline subsection).

We intend to collect data in the following settings:

In this study, we involve persons classified as dementia levels 3 to 7 according to the Global Deterioration Scale developed by Reisberg et al [106]. This means that we include persons with mild to severe loss of cognitive abilities.

As part of the observation procedures, we perform an initial screening by means of the Global Deterioration Scale [107]. We sample according to theoretical criteria and the principle of maximum and minimum contrast. Thus, we select people of different sexes and ages as well as with contrasting behaviors and care arrangements [108,109]. It is inherent to the strategy of theoretical sampling and maximum and minimum contrasting that the number of participants is determined during the research process. However, due to time constraints and the scope of the planned study, we plan 10 case observations per type of care. This corresponds to 30 case studies. The population of the planned survey (work package 3) includes formal and informal caregivers of persons with dementia in inpatient long-term care and domiciliary care settings in German-speaking Switzerland and Germany. We will analyze the data obtained through the survey using confirmatory factor analysis (CFA). While there are challenges in determining the statistical power and sample size for such an analysis [110], a widely accepted ratio is 10 cases per indicator variable [111]. We expect to generate approximately 50 indicator variables during the typology development, which would require a sample of 500 individuals. Accounting for a dropout rate of 10% [112], the recruitment of 50 additional individuals would result in a total required sample of 550 individuals. Given the difficulty of recruiting informal caregivers [113], we aim to recruit more formal than informal caregivers. We therefore plan to recruit an opportunity sample comprising approximately 400 formal (Germany: n=250, 62.5%; Switzerland: n=150, 37.5%) and 150 informal (Germany: n=100, 66.7%; Switzerland: n=50, 33.3%) caregivers.

Our approach enables us to obtain information about the nature, frequency, and prevalence of the phenomenon of times without care and encounters. We will be able to make statements about how people with dementia and their caregivers experience and interpret these times for themselves. We will demonstrate how people with dementia act during these times and what purpose they pursue. The developed typology will provide the foundation for assessing these periods using a survey instrument, which can be validated in a follow-up project, with two intentions: (1) to assess times without care and encounters in a representative and reliable way with this instrument and (2) to develop a diagnostic instrument for nursing practice.

Furthermore, with this project, we would like to make a fundamental methodological contribution to advancing research on and with persons with dementia.

In the context of dementia care research, procedures for field research, intervention planning and implementation, and data collection require an extended framework of both care ethics and research ethics. However, at the same time, there are almost insurmountable problems of validity and generalization. The proposed research strategy envisages not only methodological and methodical triangulation but also data triangulation and researcher triangulation. In this way, we would like to contribute to the existing cross-disciplinary discourse on these problems. However, our research is limited by the fact that we are studying 2 relatively similar care cultures and cannot resolve validity issues. Nevertheless, this research represents an ongoing effort to understand and reconstruct the lifeworld of people with dementia.

With our research, we intend to pave the way for a qualitative assessment of lived times without care and encounters in persons with dementia and for scrutinizing organizational and professional practices. In doing so, we also ask about the need for change. However, expecting a priori a need for change with regard to all times without care and encounters seems to be inappropriate and paternalistic—despite initial scientific findings pointing in this direction. Therefore, it is our intention to present examples that have been described and proven as good practice.

In this research project, we shed light on the concepts of autonomy, well-being, independence, self-determination, and meaningful activities of persons with dementia in relation to the need for security and continuous attachment to formal and informal caregivers in times without care and encounters. The tensions involved in everyday dementia care will continue to intensify as social and human care resources become increasingly scarce. Against the background of the current political and social understanding of care, it is unlikely that the situation regarding times without care and encounters in persons with dementia, although considered worthy of change, will be addressed in a humane way. In a survey of nursing and care staff in Swiss care institutions, caregivers reported times when they had to keep residents waiting or were unable to offer them emotional support or engaging care [153]. Therefore, it seems essential to consider alternative interventions and possibly technical alternatives.