Dementia special care units in nursing homes: a revised program theory resulting from a theory-driven evaluation

doi:10.21203/rs.3.rs-4809526/v1

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Dementia special care units in nursing homes: a revised program theory resulting from a theory-driven evaluation

https://doi.org/10.21203/rs.3.rs-4809526/v1

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Background: People with dementia often receive care in dementia special care units of nursing homes. The concept of these units vary considerably. Knowledge about the effects and mechanisms of action of dementia special care units is limited. The aim of the study was to evaluate a specific care concept of a dementia special care unit in long-term care. In this paper, we present the results of the evaluation study in the form of a revised program theory. The aim was to describe the components of the care concept, its context as well as its mechanisms of impact and outcomes for persons with dementia and the nursing staff members.

Methods: We conducted a theory-driven evaluation resulting in a revised program theory. The revision was based on an initial program theory and the findings of the outcome/process evaluation. The primarily data-driven revision is enriched by theory and further literature. Data analysis followed a two-step process: evaluation of the original program theory and construction of the revised program theory, consisting of an action and a change model.

Results: The action model describes interventions, context, target groups and implementers. The change model details how the program generates outcomes. Structural, organizational and educational elements promote a shared person-centered understanding of care among nurses. A unified understanding of care favors engagement in meaningful activities and social interactions. It also supports early interventions addressing challenging behavior. Mutually reinforcing interventions create positive experiences and maintain the residents’ personhood. The success of the program is largely based on a workplace culture and a leadership style facilitating person-centered ways of working.

Conclusion: The revised program theory highlights the positive effects of the dementia special care unit care concept on staff and residents. It provides starting points for future practice development. Considering the interdependence of interventions, increased promotion of meaningful activities and social interactions seem advisable. Future research should explore whether the mechanisms of action developed for a specific care concept are transferable to a broader program theory for specialized dementia care.

Trial registration: DRKS00011513

Dementia

nursing homes

special care unit

program evaluation

theory-driven evaluation

program theory

quality of care

behavior

social participation

Dementia is a syndrome characterized by declining cognitive and functional abilities affecting a person’s abilities to perform everyday activities, to communicate and to engage socially [1]. As dementia progresses, a significant proportion of individuals, ranging from 33–50%, experience a transition into a nursing home [2]. Consequently, in many nursing homes, persons with dementia represent a substantial percentage of residents, with prevalence rates between 50% and 80% [3–5].

Caring for persons with dementia is a challenge for nursing home providers. Orth et al. [6]. reported about unmet care needs, inadequate staff behavioral health education and inadequate infrastructure in nursing homes. To better meet the needs of residents with dementia, many nursing homes established dementia special care units (DSCUs). The popularity of these units has grown worldwide. However, there is no commonly agreed definition or regulation for these units. They are predicated upon the notion that adequate care for persons with dementia is best provided in a specialized environment [7, 8]. DSCUs ensure increased safety and provide dementia-specific care routines [12]. Apart from this commonality, DSCUs vary in the design of the physical environment, the staff and the care practices. This results in a conceptual and nominal heterogeneity [9].

Since the early 2010s, DSCUs have been the subject of research. However, a recent systematic review with 92 studies did not show conclusive evidence regarding their benefits [9]. Most included studies examined resident-related outcomes, including physical restraints, psychotropic medication, mood and affect, engagement in activities and social interactions, quality of life and challenging behavior. Some studies investigated outcomes for staff members, such as burnout, job satisfaction, mental well-being, physical strain, and learning outcomes [9]. Two further reviews an innovative living and care concepts also conclude that DSCUs may have a positive impact. However the underlying reasons remain speculative [10, 11]. Authors often do not explain how interventions work (mechanisms of impact) and why they expect certain changes in outcomes. Inconclusive results on the effects of DSCUs may be partly explainable by methodological challenges associated with empirical studies on DSCUs [7]. The lack of clarity in the definition of DSCUs and their constituent characteristics [12] can result in investigating DSCUs that are based on heterogenous concepts and resident-case-mix. [7, 9, 11].

The lack of theoretical underpinnings impedes the development of intervention studies and evaluation studies [13]. Modelling the outcomes is not possible. Over the past few years, there have been increasing calls for more theory in intervention reporting [13], particularly in relation to complex interventions or programs. Recent years have also seen an increase in the use of theory-based evaluation methodologies in health intervention research [14, 15]. This is also reflected in the latest iteration of the influential Medical Research Council framework for developing and evaluating complex interventions. It now includes a theory-based perspective in its methodological guidance [16].

Aim

As part of a theory-driven evaluation of a DSCU in long-term care, the aim of the study reported in this paper is the revision of the program theory of the care concept of the DSCU. To increase the validity of the program theory, the propositions of the initial program theory were assessed with empirical data and the findings synthesised in the revised program theory. In the revised program theory, we aim to describe the components of the care concept, its context as well as its mechanisms of impact and outcomes for persons with dementia and the nursing staff members.

Our study aims to contribute to a better understanding of the effects and mechanisms that characterize DSCUs. This information allows decision-makers to recommend the concept, its further dissemination, adaption, or future developments. Our study responds to the call for more theory in intervention reporting [17]. The results of this study may inform the development and adaptation of innovative care approaches for people with dementia and provide a basis for future research.

Design of the overall study

We conducted a study embedded in the idea of theory-driven evaluation, wherein we revised the initial program theory of the care concept of the DSCU on the basis of empirical data. Program theories establish a theoretical understanding of a care concept by detailing assumptions about the components, context processes, as well as desired and undesired changes of outcomes [18, 19]. They consist of a theory of action describing the intervention components, and a theory of change explaining the mechanisms of impact and outcomes [20]. The mechanisms of impact outline how the concept brings about change. Determining these mechanisms was crucial to understand the potential benefits of the concept. We used a theory-based evaluation approach due to its capacity to unravel “the complex interplay between a program (and an intervention), context, targeted actors, causal mechanisms and expected outcomes” [21].

The main foundation of the revision are the initial program theory^[1](see additional file 1) and the results of the process and outcome evaluation. Therefore, the revision is primarily data-based and enriched by theory and further literature. The primacy of the data reflects our aim to investigate the mode of action of this particular DSCU. We revised the program theory by following steps 4 to 6 of a six-step approach to theory-driven evaluation^[2] [23]. Steps 4 and 5 refer to the assessment of the initial program theory. Using the qualitative and quantitative data from the process and outcome evaluation, we jointly interpreted the original program theory. To revise the program theory (step 6), we translated the results of the joint interpretation into the action and change model [24].

In previous publications, we reported steps 1–3 of the theory-driven evaluation, including the initial program theory and parts of process and outcome evaluation [20, 22, 25, 26].

Additional file 2 contains unpublished results of the process and outcome-evaluation.

To the best of our knowledge, there are no reporting guidelines for program theories so far.

Therefore, we used the checklist for reporting theory of change in public health interventions [27] as a guide (additional file 3).

The care concept of the DSCU

The DSCU concept was designed for persons with moderate dementia who exhibit challenging behavior. The DSCU key features include:

(a) Three small-scale, home-like wards with a central kitchen and living area, adjacent resident rooms, and direct garden access.

(b) Educational interventions such as level 1 and 2 training in Validation theory, along with coaching and supervision sessions for members of the nursing team.

(c) A person-centered and emotion-oriented approach to care based on Naomi Feil’s Validation therapy [28]. This method emphasizes the importance of another’s experience, unconditional appreciation, and recognition of individual needs. Validation therapy incorporates various communication techniques. It is an attitude in dementia care and represents a structured therapeutic activity on an individual or group basis [29, 30].

(d) Personalized non-pharmacological interventions addressing challenging behavior through relaxing, personalized, and emotion-oriented care – with the aim of understanding and meeting resident’s needs. Activating and personalized interventions serve to promote social participation and engagement in purposeful activities. During the day, a nurse is assigned to offer activities to the residents, such as knitting, cooking, gardening, and reading, either in groups or on an individual basis.

Setting

The setting consisted of two DSCUs in a nursing home located in a rural area in Eastern Austria. Both DSCUs had implemented the care concept. In the "Results" section ("Internal Context"), we describe detailed characteristics of these DSCUs.

Data collection

For the revision of the program theory, we used the results of the process and outcome evaluation. The evaluation consisted of sequentially and parallelly conducted qualitative and quantitative sub-studies. We collected data in the DSCUs and in two non-specialized nursing homes. For the qualitative process evaluation, we conducted participating observations, semi-structured interviews and focus groups with nurses [25].

The quantitative part of the process evaluation and a subset of the outcome evaluation relied on data from a survey among nurses (see Additional File 2)^[3]. Furthermore, the outcome evaluation included data from a longitudinal study with proxy data from residents (including, for example, the outcomes “challenging behavior“ and “quality of life”; Additional File 2)^[4].

We also relied on an observational study with the Maastricht Electronic Daily Life Observation Tool [26].

To discuss and validate the initial program theory as well as the preliminary version of the revision, we conducted a focus group interview with five nurses and an individual interview with the nursing manager of the DSCUs. In addition, we consulted nursing scientists. To facilitate informed and in-depth discussions, we sent a written version of the revised theory to the participants one week before the respective meeting. The communicative and collegial validation resulted in minor changes in the action model, the presentation of the change model and the reporting of the entire program theory.

Data analysis

Assessment of the initial program theory

To assess the initial action model (step 4) and the initial change model (step 5), we jointly interpreted the initial program theory together with the results of the process and outcome evaluation. We extracted the key findings of all data and integrated them in a joint display by arraying them in one table. This allowed a direct and more nuanced comparison of the results [39]. First, we identified key aspects of the action model and the change model across all data. Second, we filled in the results of the respective data collection methods in the columns. This led to a side-by-side presentation of (a) the initial program theory, (b) the outcome evaluation results and (c) the process evaluation findings on the identified key aspects. In a third step, we interpreted the results.

For this purpose, “quantitative results (were) transformed into qualitative text” in the form of verbal descriptions [39]. This type of transformation was chosen because the result of the integration was also narratively reported and as such provided the basis for the revised program theory. The merging of the data resulted in two joint displays – one for the action model and one for the change model. The merging process is graphically displayed in Fig. 1. An extract of a joint display can be found in additional file 4.

[PLEASE INSERT HERE FIGURE 1]

Figure 1: Graphical display of the merging of data

Revision of the initial program theory

The process of theory construction allows only limited systematic description. The creative momentum inherent and indispensable to theory development/construction eludes formalization [40]. However, to make the process more transparent and comprehensible, we followed the prescriptive procedural model for program theory construction by von Werthern [40]. We iteratively moved between inductive and deductive data. By means of abduction, we created iterations of the revised program theory. We repeated this process several times, each time comparing the new version of the program theory with the evaluation data and with the literature. The joint displays depicting inductive data was the starting point for comparison with the literature (e.g., concept analyses, empirical research findings addressing specific aspects of the program theory). If the statements on an aspect were unclear or contradictory, we included the detailed evaluation results and, in some cases, the evaluation data in the analysis. By means of abduction, we considered the previously unrelated aspects of inductive and deductive data [41, 42]. Thereby, we iteratively shaped the building blocks of the revised program theory and elaborated their interrelationships. We used the action and change model [24] to construct the revised program theory. We validated the preliminary version of the revised program theory in discussions and incorporated the results into the final version of the revised program theory. To clarify the interrelations of the theory's elements and to present them clearly, we followed the recommendation of Funnel and Rogers [19]. We presented the interrelations (a) graphically, (b) in tabular form, and (c) as text [19].

The revised program theory includes (i) a revised action model describing how the program is constructed, structured and organized, and (ii) a revised change model setting out the key mechanisms and the changes they trigger.

The revised action model

The revised 'action model' is divided into interventions and internal/external context (Fig. 2). Interventions are related to residents, nurses and the unit (spatial/personnel composition). Like any person and object, each part of the action model has an infinite number of characteristics (e.g., number of staff, number of staff from the community, number of staff with children, etc.) In our model, we describe characteristics that are (a) relevant for the program theory, (b) trigger mechanisms of impact or (c) influence mechanisms and outcomes.

[PLEASE INSERT HERE FIGURE 2]

Figure 2: Revised action model

The inner context is related to the nursing home with the DSCU. The nursing home belongs to a private provider operating numerous nursing homes and other health care organizations in Austria and other European countries. The nursing home has two dementia specialist wards and two non-specialist wards. According to a weekly schedule, geriatric care offer group activities (unit-specific and inter-unit). Residents of the dementia special unit can participate in unit-specific activities (e.g., singing) and inter-unit activities (e.g., church service, cinema). The organizational culture is essentially shaped by nurse managers. It can be characterized as person-centered, recognizable by a person-centered attitude towards residents, families, staff and colleagues. As in Austria as a whole, nurses’ time resources are limited. Time per resident is longer in the DSCU, partly because of the staff deployment strategy "Dedicating time for activities" (see spatial/personnel composition of the unit). Nevertheless, due to sick leave and holidays, time resources are also scare.

The external context is formed by peer/partner (organizations), residents’ family members, the environment of the nursing home, and society. Partner organizations include, among others, regional and national subcontractors of the nursing home provider, local hospitals, nursing homes, mobile care services, regional training institutions in the health sector, and community-based institutions.Volunteers working in the DSCU are specifically trained to support residents (e.g., by accompanying them to medical appointments). In the DSCUs, there is an intensive cooperation between nurses and family members. Relatives often act as advocates of persons with dementia. They inform nurses about the biography, the current situation and patterns of communication/behavior. The societal and political level of the external context is predominantly characterized by an undervaluation of professional geriatric care and scarce financial resources.

Program implementers are nurse leaders with a transformational leadership style. They are responsible for interventions focusing on nurses and on the spatial/personnel composition of the unit. Their person-centered attitude towards nurses is expressed in direct conversation, in the creation of individualized) rosters and in support for challenging situations. Nurse leaders influence the organizational culture, the working atmosphere, and the understanding of care. Sets of interventions for nurses include «training», «reflection processes» and «team meetings». All nurses receive training on dementia and Validation therapy. Collaborative reflection processes take place in case of situations experienced as challenging. There are formal and informal team meetings (formal: handovers; informal: morning breakfast).The target population consists of nurses working in the DSCU, regardless of their formal education or other criteria.

The spatial/personnel composition of the unit refers to a set of interventions addressing relevant outcomes. The unit is divided into three small residential groups for ten persons with a household-like design. The three groups are connected in the center by a community room designed as a circular walkway with various possibilities for rest or sensory stimulation. All groups have direct access to the large sensory garden designed for people with limited mobility. The architectural design of the DSCU offers spaces for movement, social participation or retreat into a private area (bedroom). The personnel deployment strategy “Dedicating time for activity” includes selected activities with a small group of residents (e.g., trips to the village or to a farm, baking, having a longer conversation or looking at a photo album).

Program implementers for interventions focusing on residents are nurses with knowledge and skills in caring for persons with dementia. They have a common understanding of care following the example of nurse leaders. The organizational culture is underpinned by two assumptions: (1) Behavior of persons with dementia is meaningful and considered as a way of communication and (2) care should be person-centered. Person-centeredness is based on the principle «walking in the other person’s shoes» based on Feil’s Validation method. It allows the person with dementia to live and experience their own personhood, to experience connectedness with society and to lead a meaningful everyday life in a familiar environment. Meaningful activities, social participation, and early interventions in case of challenging behavior are of central importance. Nurses promote meaningful activities throughout the day in a person-centered manner in terms of content, duration, timing and mode of participation according to the resident’s resources, needs and preferences. The geriatric nursing team organizes group activities depending on the resident’s preferences. Nurses also promote social participation by person-centered impulses for social interaction. They actively seek exchange with family members. Nurses respond to challenging behavior with early interventions. They act either preventively or at the first signs of unmet needs. Therefore, the interventions in this set are heterogeneous. Their common denominator is the fulfilment of needs in response to challenging behavior.

The revised change model

The revised change model shows that the outcomes of interventions focusing on nurses and on the spatial/personnel composition of the unit are necessary to implement the interventions focusing on residents (see Fig. 3). The revised model makes apparent that training, collaborative reflection processes and the personnel deployment strategy “dedicating time for activity” are essential for shaping the understanding of care and for enabling nurses to implement person-centered care. The spatial/personnel composition of the unit provides the resources to implement the person-centered understanding of care. Furthermore, team meetings and collaborative reflection processes promote a positive working atmosphere. They are essential for staff loyalty and for a sustainable implementation of the shared understanding of care. Interventions for residents are based on the understanding that persons with dementia communicate needs by means of behavior. Nurses should promote person-centered activities and interactions. Interventions should foster meaningful activity and social participation. In the case of challenging behavior, nurses provide psychosocial interventions at an early stage.

The outcomes of the three sets of interventions for residents (“meaningful activity”, “connectedness”, “relaxation”) reinforce each other. They create positive experiences for persons with dementia and contribute to sustaining personhood.

[PLEASE INSERT HERE FIGURE 3]

Figure 3: Overview of the revised change model

In the following, we present the revised change model of the DSCU care concept in more detail. We describe inputs, sets of interventions, mechanisms, and outcomes.

Interventions focusing on nursing staff consist of three sets: “training”, “collaborative reflection processes” and “team meetings” (see Table 1).

Table 1

Change model – interventions focusing on nursing staff
Input		Sets of interventions	Mechanism	Outcomes⁺
				I	II
Transformational leaders acting unanimously Organizational culture (characterized by mutual appreciation and openness to discourse) Time and financial resources	Congruence 2	Education and training on the topic of dementia for all nurses (Validation according to Feil; other courses)	Activates memory and reproduction processes Shapes a shared understanding of adequate care for persons with dementia	Competent, flexible nursing team • Shared understanding of care* (attitude) for persons with dementia (behavior as communication, person-centeredness) • Capacity for action in everchanging situations Consistently lived understanding of creative care in everchanging situations	Different nursing practice (oriented towards residents’ needs, resources and preferences) Modified prioritization of tasks Continuous acquisition of knowledge and skills; Increased self-efficacy of the whole team (positive/reinforcing feedback loops)
		Collaborative reflection processes (for situations experienced as challenging)	Enables team members to share, discuss and evaluate their experiences and opinions and to develop a common viewpoint Promotes in-depth understanding of residents’ behavior and specific situations Encourages a common understanding of care in situations experienced as challenging
			Promotes mutual understanding and a feeling of being a valued member Makes nurses feel supported	Positive work climate Culture of solidarity: nurses support each other	Job satisfaction Staff retention Sustainable implementation of the care concept
		Team meetings (informal/formal, ritualized/spontaneous)	Promotes mutual appreciation and team cohesion

⁺ The outcomes are divided into two columns: (1) direct outcomes of the interventions; (2) higher-level outcomes influenced by the intervention.

* In this context, 'competence' is holistically understood as the ‟summation of personal forces that must interact to master a situation – from knowledge to skills and abilities to motives, dispositions and value-based attitudes" [43].

Since all members of the nursing team receive the same training and further education on dementia, they develop a similar understanding of adequate care. They also have the knowledge and skills to implement this kind of care (Table 1).

Due to the acquired knowledge and skills, all members of the nursing team are always capable of acting in accordance with the person-centered understanding of care, particularly in challenging and changing situations. The effect of the educational interventions is supported by collaborative reflection processes within the nursing team on situations experienced as challenging. Nurses can exchange their points of view and thereby mutually increase their understanding of resident’s behavior. Care is oriented towards the person’s needs, resources and preferences. Corresponding nursing tasks are prioritized. This is a departure from function-orientated care to person-centered care. It is accompanied by a shift in time management, with more time spent on psychosocial interventions. As the education and reflection processes are ongoing, the care team continuously monitors, evaluates and increases their knowledge and skills in positive reinforcing feedback loops. Nurses’ perceived self-efficacy also increases as a result of acquired knowledge and skills combined with application and reflection processes. Informal and formal team meetings promote mutual understanding and appreciation. They contribute to a pleasant working atmosphere and a culture of solidarity. This is reflected in a (relatively) high level of job satisfaction and a low turnover rate. A high level of staff loyalty is essential to consistently practice the person-centered understanding of care. This is the basis for all resident-focused interventions. Interventions for nursing staff can trigger mechanisms of impact only under the condition that they are congruent with the input. An organizational culture based on mutual appreciation and openness promotes the perception of the person in others – be it a colleague or a resident. Under these prerequisites, organizational culture supports person-centered care.

The spatial/personnel composition of the unit includes small, household-like living groups and the staff deployment structure “dedicating time for activities” (see Table 2).

Table 2

Change model: spatial/personnel composition of the unit
Input	Sets of interventions	Mechanism	Outcomes⁺
Input	Sets of interventions	Mechanism	I	II
Vision of adequate care of and environment for persons with dementia in nursing homes Spatial/financial resources	Personnel deployment strategy “dedicating time for activities”	Provides nurses with time to promote meaningful activities and to engage in social interactions Conveys nurses the feeling that promoting meaningful activities and social engagement is part of their job	Understanding of care, including physical/ psychosocial aspects and meaningful activities Promotion of residents’ engagement in activities and social interaction by nurses during extra and regular shifts	Socially engaged residents Residents’ engagement in meaningful activities
	Small, household-like units (Familiar design: floor plan, furnishings, exclusively for persons with dementia, one nures on duty by shift)	Working autonomously	Autonomous decision-making: Organizing the day according to nurses’ own task prioritization	Job satisfaction (feeling trustworthy, experiencing recognition of skills, being able to put the understanding of care into practice)
		Perceived as spaces with a constant but low level of acoustic and visual stimuli Facilitates the fulfilment of residents’ needs of engagement in activities and social life	Time spent in community areas reduces residents’ retreat to bedrooms	Social engagement of the residents (living in a social community) Engagement in meaningful activities “Sense of place”: living in an environment that creates connectedness Focusing nursing activities in community areas: increased reach of nursing impulses for social interaction
		Enables focusing educational activities on dementia	Specialization of the team– high competence in the care for persons with dementia	Quality care for persons with dementia

⁺ The outcomes are divided into two columns: (1) direct outcomes of the interventions; (2) higher-level outcomes influenced by the intervention.

In a small, household-like group, a nurse takes over all tasks during a day service. Due to this, it is necessary that the nurse organizes the day independently. Working autonomously contributes to job satisfaction. The constant level of acoustic and visual stimuli in small household-like living groups and the familiar design prompt residents to spend the majority of time in community areas. Here, they are more likely to experience meaningful activities and social participation compared to spending time in their own room. The small units promote a "sense of place". This means being connected to the environment, to oneself and to others. Nurses also work mainly in the community areas since residents spend more time there. Subsequently, their impulses for social interaction and meaningful activities reach several residents at once. The design of the living groups facilitates residents’ orientation and allows them to move on their own. Nurses on duty in the extra shift focused on “time for activities” primarily ensure the promotion of meaningful activities and social interaction. In doing so, they put their understanding of care into practice. The personnel deployment strategy facilitates the promotion of activities and social participation as a nursing task. Correspondingly, nurses in regular shifts are also more likely to encourage activities and social participation.

The sets of interventions for residents include personalized, meaningful activities, the promotion of social participation and early interventions in case of challenging behavior (Table 3).

Table 3

Change model – interventions focusing on residents
Input		Sets of interventions		Mechanism		Outcomes⁺
						I		II
Understanding of care: behavior is communication; person-centeredness: living/experiencing personhood in relationships and activities Competent nurses Autonomous working with mutual support Small, household-like units Time to put the understanding of care into practice	Congruence 2		Promotion of meaningful activities Personalized activities offered by nurses throughout the day; (personalized in content, type, timing, duration and way of participation) Including sensory stimulation, reminiscence, music, household workshops, gardening, celebrations, use of media		Increases motivation to participate Promotes residents` focus on activities Enables residents to use their resources purposefully and to interact meaningfully with people/with the environment Enables residents to live and experience their own personhood		Time spent in activities Meaningfulness Positive experiences		Social engagement Relaxation Sustaining personhood Self-esteem
			Promotion of social engagement (living in a small, household-like unit, person-centered impulses for social engagement, proactive and appreciative communication with family members)		Promotes spending time together Encourages shared experience Fosters opportunities and reduces barriers for social interaction: - with other residents - with nurses		Being part of a social community Being part of a fragile, social (sub-)group Social interaction Emotional connections to other residents and nurses		Connectedness Affection Positive experiences Sustaining personhood Relaxation
					Promotes the feeling of being valued and integrated in the company of family members		Time spent with family members Interactions with family members Relationships with family members
			Early intervention in case of challenging behavior (behavior as a way of communicating needs) Interventions serve to satisfy needs ◊ person-centered care)		Interrupts the arousal cycle before the escalation phase* Satisfies needs (verbal or nonverbal communication) Promotes feeling heard, accepted and understood		Relaxation (Relaxed, purposeful movements and verbal expressions)		Engagement in meaningful activities and social interactions Sustaining personhood Calm environment; relaxation of other residents (positive feedback-loops) Time spent in community areas Nurses’ work processes

⁺ The outcomes are divided into two columns: (1) direct outcomes of the interventions; (2) higher-level outcomes influenced by the intervention.

*The arousal cycle comprises phases of challenging behavior, differentiated in five phases: wellbeing, trigger, escalation, challenging behavior, and recovery. During the trigger phase it is possible to calm a person down. In contrast, agitation grows in the escalation phase and affects cognitive and emotional control. Residents will less likely respond to distracting activities and calming interventions [44].

Nurses encourage residents’ participation in activities. Personalized activities result in meaningful experiences. Personalized activities allow residents to use their resources. This has a positive impact on their self-esteem. Residents spend more time on meaningful activities. This creates positive experiences and maintains personhood. Since activities often involve social interactions, social participation is also promoted. Furthermore, activities satisfy needs and thus foster relaxation.

Living in a small, household-like group encourages social participation and communication with family members. Living together contributes to sharing experiences and thereby becoming a social community. Additionally, nurses offer personalized interaction stimuli or promote conversations, thereby enabling residents to interact with others. Increased interaction leads to the formation of social (sub-)groups and emotional connections with others.

Nurses actively foster communication with family members to make them feel respected, understood and welcome. This is demonstrated by the fact that family members spend more time with the residents and interact differently with them.

Intensified social interactions enhance the feeling of connectedness with others, thereby contributing to sustained personhood. These are the prerequisites to satisfy residents’ needs and promote relaxation.

In dealing with challenging behavior, nurses use personalized, psychosocial interventions at an early stage of the arousal cycle. They understand behavior as a way of communicating needs. Nurses try to recognize and satisfy these needs as early as possible. Subsequently, residents feel heard, accepted, understood and, therefore, relaxed. Their relaxation is transmitted to other residents through feedback mechanisms. This creates a calm atmosphere in the community areas – with low noise levels and purposeful, unagitated movements. As a result, residents spend more time in the community areas. Early interventions have an influence on nurses’ work processes. They spend less time on de-escalation and more time on promoting activities and social participation. This, in turn, helps to reduce stress.

The aim of this study was to evaluate a specific care concept of a DSCU in long-term care and to thereby revise an initial program theory on the basis of the results of the process and outcome evaluation in real life setting [19, 45]. To increase the validity of the program theory, the propositions of the initial program theory were assessed with empirical data and the findings synthesised in the revised program theory. In the revised program theory, we aim to describe the components of the care concept, its context as well as its mechanisms of impact and outcomes for persons with dementia and the nursing staff members. We investigated whether, how, for whom and in which context the care concept of a DSCU works. In doing so, we either confirmed, refined or refuted the propositions of an initial action model and change model.

The revised program theory makes clear that the DSCU achieves positive outcomes for residents. Therefore, we can positively answer the question whether the care concept of the DSCU works. The outcomes refer to relaxation, social connectedness and engagement in meaningful activities. These factors allow to sustain personhood and to promote positive care experiences. According to our results, the impact of the DSCU on nurses is favorable as well (positive work climate, continuous acquisition of knowledge and skills, job satisfaction).

The question of how the DSCU works, can also be answered. The revised program theory indicates that interventions following the imperative of person-centeredness allow persons with dementia either to engage socially and meaningfully in activities or to relax. If structural resources (e.g., small-scale/homelike units, organizational culture, transformational leadership) are aligned under a vision of person-centered care, they promote a mutual understanding of care and the capacity to act on it.

For whom does the care concept work best? We found that the benefit is particularly high for mobile residents with moderate dementia and challenging behavior.

Which context is favorable? According to our revised program theory, a sustainable implementation requires highly transformational, unanimously acting leaders, an organizational culture built on mutual appreciation and openness to discourse, and spatial as well as financial resources. These prerequisites ensure that mechanisms are activated effectively.

We maintained the main building blocks of the original program theory. However, we enriched the descriptions and specified terms and concepts (e.g., “person-centered activities” vs. “promotion of engagement in social interaction”). Based on the empirical data, we reconstructed the mechanisms of action more concretely. This resulted in a finer, more detailed description of mechanisms but also required changes in the formulation of results. Consequently, there are significant differences between the original and the revised program theory. In the original version, we considered leadership as part of the interventions. Our data, however, showed that there was a persistent challenge in explicitly identifying and describing the leadership style and associated behaviors or interventions. The observation indicated that transformational leadership was not implemented in a planned manner. Since a program typically encompasses intentionally planned activities [46], we no longer categorized leadership as an intervention but as a context factor. In a similar way we revised our initial assumption that providing education and training would enhance nursing skills and knowledge. We anticipated that educational interventions reduce the strain and subsequently increase job satisfaction. However, or analysis of qualitative and quantitative data did not support this thesis. Consequently, we had to acknowledge that nurses’ reduced strain was not an outcome. The mechanism of impact proved to be different from our initial assumptions.

A key finding of the revised program theory concerns the integration of interventions focusing the outcomes of meaningful activities, connectedness, and relaxation. These outcomes are highly interrelated [25, 26]. This is in line with the findings of Rosteius et al. [47] who also described an interdependence of main themes. They concluded that creating a community led to more meaningful activities and social interactions [47]. A review of innovative living and care arrangements for persons with dementia also supports this assumption [11]. Speckemeier et al. state that small, homelike living arrangements (like in the DSCU of our care concept) encourage social interaction, meaningful activities and have a positive emotional impact. Of all the dimensions quality of life encompasses, e.g. described by Lawton [48] and Ettema et al. [35], social relations and having something to do seem to be particularly influenced by special care and living concepts. Our findings show that personalized activities may reduce agitation, as described by Möhler et al. in the Cochrane review [49], and foster relaxation. The empirical findings of the evaluation of this specific care concept support the assumption (see findings of the survey in the supplementary material), which is why these three aspects (meaningful activities, social connectedness and relaxation) represent the core of the program theory regarding residents.

According to our program theory, interventions focusing on residents only work effectively, if they are person-centered. It is necessary that they are tailored to the current needs and preferences of the resident and to the nurse caring for that resident. In a concept analysis on meaningful activities, Tierney et al. confirmed that activities are only meaningful if they relate to an aspect of the person’s identity and are individually targeted to the person’s preferences, skills, abilities, and goals [50]. A review by Lee et al. on person-centered care for persons with dementia found immediate effects on challenging behaviors [51]. However, there are various interpretations of “person-centeredness” [45]. Therefore, it is essential to acknowledge that the implementation of person-centered care requires a high level of adaptability on the part of the nursing team. Collaborative reflection can enhance the adaptive processes.

Another important empirical finding concerns the necessity of coherence between the interventions (person-centered residential care for residents), organizational culture and spatial resources. Recent research on innovative living concepts emphasizes the impact of an interrelation between the physical, the social and the organizational environment [47]. Thus, it is necessary that nurses are aware of this interrelationship in order to ensure meaningful experiences for persons with dementia [52]. The high relevance of coherence is also accentuated by a theory of change elaborated in the context of a nursing home in Germany. Desch et al. underline that the creation of a meaningful living environment requires integrated activities [53]. To achieve this, the physical environment and the activities need to be aligned. The literature emphasizes that organizational structures and cultures, including changes in staff roles and responsibilities, are necessary for positive effects [11]. In our program theory, “dedicating time for activities” as a nursing task altered the understanding of care. Members of the nursing team were more engaged in activities and social interactions when they were also assigned to another duty, thereby combining personal care and meaningful engagement. Haunch et al. [54] call this “making the most out of it”. A coherent environment and culture in support of person-centeredness must be consciously designed [46]. Therefore, there is a need for nurse leaders who consistently harmonize the physical, social and organizational environments and function as role models for person-centered care. Core elements of our revised program theory are in line with the established theoretical framework of person-centered care by McCormack and McCance [55]. The “person-centered practice framework” proposes that workplace culture is critical for developing person-centered practice. Importantly, our revised program theory comprises structures and processes enabling nurses to work in a person-centered manner. Taken together, person-centered interventions (program assets/features), powered by strong leadership, result in generating a social and physical environment that is conducive to person-centered ways of working. A person-centered working culture, in turn, can lead to the intended outcomes.

This theory-driven evaluation adds value to the research field by explaining and specifying outcomes based on the description of mechanisms of impact. In their review on innovative living and care arrangements, Speckemeier et al. [11] conclude that “the reasons for the favorable results […] remain speculative”. In a systematic review on dementia special care, Orth et al. [9] stated that only few studies elaborate on mechanisms of outcome. Therefore, an adequate assessment of outcomes is scarce. The authors recommend randomized controlled trials to evaluate DSCUs. Controlled trials, by their very nature, reduce complexity. This may conflict with the complex nature of DSCUs and important mechanisms of action may be missed. We therefore advocate a research perspective that takes this complexity into account [14]. The benefit of theory-based evaluations is their potential to address the complex interplay of the program, the context and the target groups [45]. In addition, a rigorous explanation of mechanisms of impact is vital for a clear interpretation of changes in outcomes [13] as well as for replications and intentional adaptions or future developments. Helping professionals to understand interventions and their effects is another benefit of program theory [13, 56]. A thorough comprehension of the interventions promotes adherence to the program and fosters sustainable implementation. In our study, developing the initial program theory with nurses proved to be eye-opening and motivating since nurses understood the impact of their actions.

Methodological discussion, strength and limitations

It is a strength of this study that the revised program theory is firmly grounded in stakeholder theories and in a variety of empirical data. The empirical evaluation of the propositions increases the accuracy and strengthens the validity. However, it is essential to acknowledge that propositions within the revised program theory may necessitate further adjustment based on new data. As such, the program theory remains an approximation to reality, subject to refinement with each iteration.

Concerning the action model, we have preserved the fundamental components of Chen’s conception [24], while customizing the structural framework. It was important to us that the action model reflected the program in the best possible way, thereby adhering to the principle of theory-based evaluation: form follows function [40]. For instance, we refrained from employing a service delivery protocol with detailed descriptions of form and content. This would have contradicted the principle of person-centeredness. It would also not have adequately reflected the complexity of the program [46, 47]. In some cases, abstraction is necessary [57]. The respective interventions are characterized on an abstract level according to their function (e.g., promotion of activities). The change model is roughly based on a generic pipeline logic model [58] as recommended by Funnel and Rogers [19] for presenting the theory of change.

A change model should not only show outcomes. It should also indicate how change occurs [19]. This is a strength of the theory-driven approach. Therefore, we expanded elements of the logic model (“input”, “activity/intervention”, “output”, “outcome” and “impact”) in order to include mechanisms.

Considering limitations, we have to acknowledge that theory-driven evaluation [24] takes account of the context and also provides the opportunity to examine its impact on mechanisms and outcomes. However, a realist evaluation approach would have placed greater emphasis on investigating how context influences outcomes. By constructing context-mechanism-outcome configurations, realistic evaluations supposedly provide a clearer answer to the evaluative question: What works for whom and in what circumstances? A realist approach might have led us to formulate different mechanisms. Further methodological reflection and discussion is needed to explore the impact different approaches of theory-based evaluation have on the findings and especially identified mechanisms. A further limitation of this study is its restricted applicability. We developed the program theory for a specific care concept. Our concept differs from other research focusing on DSCUs based on a more general concept. The high specificity of the program enhances accuracy and assists local decision-making. However, it may limit transferability due to differing contextual factors (nursing education, regulations, politics and culture).

Future research is necessary to explore the transferability of mechanisms in varied contexts, such as the idea of “reusable conceptual platforms” for particular types of interventions [57]. For the future, it is important to identify which mechanisms generally apply to specialized dementia care (also outside of DSCUs) and thereby determine potential building blocks for a middle-range theory. One approach is to consolidate existing program theories and then test them.

The revised program theory shows that the care concept of the DSCU encourages engagement in activities and social interactions and promotes relaxation. Our program theory also depicts how interventions in these areas mutually reinforce each other. Future practice development efforts should be aware of this interaction. Our findings can inform dementia care practices aiming to improve the quality of life of persons with dementia.

This study supports long-standing calls for a paradigm shift in dementia care practice, from a focus on problems and challenging behavior to the promotion of meaningful activities and relationships.

We also propose a critical view on care practices dividing nursing tasks and activity/leisure tasks and assigning them to two different professional groups. This practice is particularly prevalent in German-speaking countries. Such a division probably interferes with person-centered care.

The program theory also describes how the care approach promotes the development of nurses’ skills and knowledge, as well as job satisfaction and retention. These aspects, in turn, promote sustainability. At a time of increasing job fatigue and high turnover in care teams, our findings are particularly relevant for nursing home managers and policy makers. In summary, the revised program theory provides starting points for developing innovative care concepts and policy frameworks for long-term care. Future research should test the transferability of the program theory, compare it with other program theories in order to develop a more general theory of specialized dementia care.

DSCU – dementia special care unit

Ethics approval and consent to participate

The ethical board of the German Society of Nursing Research approved the study (N° 16–024). Informed consent to participate was obtained of all participants.

Consent for publication

Not applicable.

Availability of data and materials

The datasets used and analysed during the current study are available from the corresponding author upon reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

The study was funded by SeneCura, the nursing home operator of the participating nursing homes.

Authors' contributions

LA, SB and HM were responsible for the study design. LA collected data. Data analysis and interpretation was performed by LA, MW, SB and HM. LA wrote the first draft of the paper. All authors substantially revised it critically for important intellectual content and finally approved it.

Acknowledgements

We would like to thank all staff and managers at the study sites as well as the nursing scientists who discussed the program theory with us. Thank you for sharing your insights and giving your valuable time.

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The assumptions and theories of the concept developers and the stakeholders informed our initial program theory. We also considered the literature [22].
The approach of van Belle et al. [23] includes (1) the assessment of the scope of the evaluation and the appropriateness of theory-driven evaluation, (2) the reconstruction of an initial program theory, (3) the choice of data collection methods and development tools, (4, 5) the assessment of the initial action and change model in comparison with the evaluation results and (6) the translation of all findings into a refined program theory.
The initial program theory was informed by assumptions and theories of the developers and stakeholders of the specific SCU concept as well as literature.
We collected data with the Leiden Quality of Work Questionnaire – Nurses (LQWQ-N) [31], Person-Directed Care Scale (PDC) [32], questions used in study on the Innovative Dementia-Oriented Assessment System (InDemA) [33] and the Staff Attitudes Questionnaire [34]. More information on aim, methods and results is included in additional file 2.
We collected data for the outcomes quality of life (QUALIDEM) [35], neuropsychological symptoms (Neuropsychiatric Inventory – Nursing Home) [36], antipsychotic medication, care dependency (care dependency scale, PAS) [37] and cognition (MMSE) [38]. More information on aim, methods and results is included in additional file 2.

No competing interests reported.

additionalfile1.pdf
Additional files · additional file 1.pdf: action and change model of the initial program theory Additional file 1 displays a graphical overview of the initial action and change model of the care concept of the DSCU.
additionalfile2.pdf
· additional file 2.pdf: Summaries of unpublished outcome- and process evaluations
Additional file 2 contains summaries of the aims, methods and results of unpublished parts of the theory-driven evaluation. These include a multicenter, prospective, observational study on the effects of the care concept on residents with dementia, a multicenter, cross-sectional study on the effects of the care concept on nursing staff members and the quantitative part of the process evaluation.
additionalfile3.pdf
· additional file 3.pdf: Checklist for Reporting Theory of Change (ToC) in Public Health Interventions
Additional file 3 includes the completed reporting checklist for theory of change in public health interventions.
additionalfile4.pdf
· additional file 4.pdf: Extract of the joint display of the change model Additional file 4 shows part of the joint display of the change model for illustration purposes.

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Dementia special care units in nursing homes: a revised program theory resulting from a theory-driven evaluation

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