Background

Hospital stays are often a burden for people with dementia and are associated with negative consequences. People with dementia are at high risk of hospitalization-related functional decline, delirium, falls, mortality, longer hospital stay and nursing home admission [1,2,3]. The hospitalization of people with dementia is also a challenge for the various health care professionals working in hospitals. Health care professionals face a dilemma: on the one hand, they are confronted with existing structures, closely timed procedures and lack of resources; on the other hand, they are caring for patients who require person-centered care and have complex needs that are not met by the existing system [4,5,6].

There are various efforts and strategies to improve the care of people with dementia in hospitals [7,8,9,10]. In this context, a dementia-friendly hospital (DFH) is increasingly being discussed in health care practice, research, politics and society [11,12,13,14,15,16]. The aim of our DEMfriendlyHospital study is to identify the characteristics of dementia-friendly hospitals based on an integrative review and interviews with patients with dementia, their relatives and professional dementia experts from various health care professions. In our integrative review, we identified the following six characteristics of a DFH: continuity, person-centeredness, consideration of phenomena within dementia, environment, valuing relatives and knowledge and expertise within the hospital [17].

To contextualize these six characteristics of DFHs identified in our integrative review, we involved professional dementia experts from a hospital as stakeholders in the last step of our review process. The involvement of stakeholders such as patients, caregivers, family members, and professional or academic experts in reviews is increasingly reported [18]. Involving stakeholders in one or different stages of the review process, such as development of the research question, conduct of the review, interpretation and dissemination of the results, is used to improve its quality, relevance and impact on health practices [18,19,20,21].

However, a scoping review by Pollock et al. [18] found that the quality of reporting the involvement of stakeholders in reviews is very poor, and only 32 of 291 included reviews comprehensively reported the methods of involvement. In this article, therefore, we describe the involvement of professional dementia experts in our integrative review and reflect on the conducted methodological procedure, in addition to the content component related to DFHs.

Aim

The aim of stakeholder involvement was to discuss and reflect the results of our integrative review of DFHs with professional dementia experts. We focused on obtaining their views regarding the content and feasibility of the DFH characteristics. This allows us to contextualize the results of our review in relation to hospitals in Germany. According to this aim, we developed the following research questions:

  • How do professional dementia experts rate the relevance of the six identified DFH characteristics?

  • What modifications are needed from the point of view of professional dementia experts?

  • Which characteristics are rated most important by professional dementia experts?

  • How do professional dementia experts rate the feasibility of these DFH characteristics in hospitals in Germany?

Methods

We involved stakeholders at the ‘contributing’ level of the Authors and Consumers Together Impacting on eVidencE (ACTIVE) framework [20, 21] at the end of the review process to discuss and reflect on our completed results with the help of the views, opinions and experiences of the professional dementia experts. To involve the professional dementia experts, we conducted a group process [20] in the form of a workshop. The results of this workshop did not directly influence the results of our integrative review but were considered an independent result and will be used for the next steps in our DEMfriendlyHospital study. These steps include interviews with patients with dementia, their relatives and professional dementia experts from various health care professions. In the final step of our study all results will be synthesized in a framework of DFH.

The method and the results of our integrative review are described in detail elsewhere [17] (a brief description of the DFH characteristics, including the subcategories, is described in Table 1).

Table 1 Description of DFH characteristics including their subcategories [17]
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Recruitment of participants

Participants for the workshop were recruited from a network of dementia experts at a cooperating university hospital in a major city in Germany. The network consists of nurses who have completed a nine-day training program on “the older patient with cognitive impairment”, which is provided by the university hospital to internal and external health care professionals. After completing this training, the dementia experts work in the hospital according to their professional qualifications across all departments and function as multipliers of dementia-related knowledge to promote awareness of people with dementia in the hospital and to improve their care. The network of dementia experts meets three times a year. The professional dementia experts who attended our workshop were recruited via the network coordinator. She distributed the invitation for the workshop to all dementia experts who were part of the network. The only two inclusion criteria for participation were that the dementia experts were members of the network and would have at least started the nine-day training. The workshop took place at one of the regular network meetings in September 2021.

Description of the workshop procedures

The workshop lasted seven hours and consisted of four steps (Fig. 1).

Fig. 1
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Steps of the workshop

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  • Step 1: We started with a short presentation (CM, MR) of the key findings of the review [17] (i.e., mind map of the six characteristics of DFH) and details about the workshop (e.g., aim, process, tasks).

  • Step 2: The group was then divided into six smaller working groups of 2 to 4 dementia experts. Each group was assigned a different characteristic of the previously identified six DFH characteristics.

All groups were given the same three tasks:

  • First, to discuss and rate the relevance of the assigned DFH characteristic for the patients with dementia, their relatives and the health care professionals in the group and to obtain reasons for their ratings. The ratings were made on a 4-point Likert scale (1 = “not at all relevant”, 2 = “less relevant”, 3 = “somewhat relevant”, 4 = “very relevant”).

  • Second, to discuss each subcategory of the assigned DFH characteristic and its contents (aspects and descriptions) (Table 1) in terms of their necessity and completeness, and to modify, delete or add to them if necessary.

  • Third, to discuss whether the assigned DFH characteristic with its subcategories is presented correctly in its entirety and, if necessary, to add to or modify it.

Each group received a mind map of all DFH characteristics, one poster per task and additional working materials on the assigned characteristic (task 1: characteristic definition, task 2: descriptions of the subcategories, their subordinate aspects and their detailed descriptions (Table 2), task 3: names of all subcategories on cards) and a detailed description of the tasks. To support tasks 2 and 3, the questions “What is (not) necessary?” and “What is missing?” were written on the posters.

Table 2 Structure of the characteristic on the example of “continuity” [17]
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A time frame of 90 min was set for working on the three tasks. The researchers (CM, DP, AR, MR) were available for questions at any time during the processing time and visited the individual groups to clarify questions about the task or terminology, for example, but did not interfere in the discussion. The results of the discussion of the smaller working groups were written on posters.

  • Step 3: The smaller working groups presented their results to the whole group in short presentations of no more than 20 min. Two of the researchers (CM, MR) moderated the discussion after each presentation. The presentations and discussion in plenary were written down in a protocol by two members of the research team (DP, AR). In addition, the posters were photographed to document the results.

  • Step 4: The professional dementia experts prioritized the DFH characteristics and rated their feasibility in an anonymous questionnaire. The questionnaire was developed by two researchers (DP, CM) and reviewed, discussed and adapted by the other members of the research team (MR, AR) in a total of three team meetings. The participants were asked to rank the three most important characteristics for a DFH with numbers from 1 to 3. They were also asked to rate the feasibility of the subcategories of the characteristics using a 4-point Likert scale (1 = very difficult to implement, 2 = difficult to implement, 3 = easy to implement, 4 = very easy to implement) with the additional options “not feasible at all” and “I cannot judge”.

We also collected sociodemographic data such as age, gender and qualification of the professional dementia experts via a second anonymous questionnaire to describe the group of professional dementia experts. The participants were asked to complete both questionnaires after the workshop. The network coordinator collected the questionnaires within a few days and sent them to the research team.

Analysis

The protocols and photos of the posters were analyzed in MAXQDA [22] using content analysis [23]. For this purpose, we used a mixed deductive-inductive approach [23]. The following categories were initially formed and derived from the research questions: reasons for relevance and modification. The text passages were then read line by line and assigned deductively to the categories. In the next step, the text passages of both categories were assigned deductively to subcategories. The text passages of the category modification were deductively assigned to the subcategories: addition (sub-subcategories: subcategory added, aspect added, description contents added, description contents changed), deletion (sub-subcategories: aspect deleted, description contents deleted), renaming (sub-subcategories: subcategory renamed, aspect renamed) or merging (sub-subcategories: aspect merged). For the category reasons for relevance, the text passages were assigned to the subcategories people with dementia, relatives and health care professionals. Reasons for relevance were differentiated per group by identifying inductively sub-subcategories from the data. These sub-subcategories were created directly at a higher level of abstraction (e.g., positive patient outcomes). In addition, the category influencing factors could be inductively identified from our data and finally included in our results. Similar to the deductive categories, the text passages were first assigned to the category influencing factors and in a second step, further differentiated by inductively identifying subcategories from the data. The subcategories were formulated with a lower level of abstraction and closer to the content (e.g., staff ratio) to describe the influencing factors in detail. The initial coding was conducted by one researcher (CM) and checked by the research team (DP, AR, MR). The demographic data, rankings (prioritization) and Likert scales (relevance, feasibility) were analyzed using descriptive statistics (i.e., frequencies, percentage, means and standard deviations).

Results

Description of the participants

A total of 16 participants took part in the workshop. All participants completed the nine-day dementia expert training program. Most participants had already been working as dementia experts for more than three years (n = 13), one participant had been working as a dementia expert for two to three years, and two participants had been working for less than one year. All participants were nurses and worked in different disciplines, such as surgery (n = 7), interdisciplinarity (n = 3), conservative medicine (e.g., internal medicine, neurology) (n = 2), psychiatry (n = 1), geriatrics (n = 1), stroke unit (n = 1) and anesthesia (n = 1). Nine participants had at least one additional qualification in addition to the dementia expert program, e.g., hygiene experts (n = 3), practice instructors (n = 3), specialist trainings in psychiatry (n = 1), anesthesia and intensive care (n = 1), palliative care (n = 1) or management (n = 1). Further characteristics of the participants are shown in Table 3.

Table 3 Characteristics of the participants (N = 16)
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Relevance of the six DFH characteristics

Five of the six DFH characteristics were rated as “very relevant” for the patient with dementia except for “valuing relatives”. From the perspective of the professional dementia experts, the characteristic “valuing relatives” was rated as “somewhat relevant” for the patients; the professional dementia experts reasoned that this characteristic may not be the highest priority for the patients. The relevance of the other characteristics for patients with dementia was justified by an improvement in hospital care and associated positive outcomes for them, such as a reduction in stress and an increase in well-being, orientation, feelings of safety, sense of respect, and an improvement or stabilization of their condition and dementia symptoms. Another rationale was that these DFH characteristics could contribute to improving dementia diagnostics as well as increasing patients’ knowledge and acceptance of their dementia diagnosis.

The professional dementia experts deemed all six characteristics of a DFH as “very relevant” with regard to the relatives of the hospitalized patient with dementia. This was justified with positive outcomes for the relatives, such as having their uncertainty and fears alleviated, believing the patient was in ‘good hands’, and creating a basis of trust. In addition, the professional dementia experts reasoned that the well-being of the relatives can be increased by a DFH, and this would have a positive effect on the patient. Furthermore, the high relevance was explained by the relief of relatives, the invitation to the relatives to communicate, the experience of being noticed and recognized for their care of the patient. It was also reasoned that characteristics such as “continuity” would help make the patient’s post-discharge condition more calculable for relatives. Moreover, the improved hospital structures for the relatives, such as contact persons and counseling and support offers, were mentioned in this context.

The professional dementia experts rated all characteristics except “valuing relatives” as “very relevant” with regard to the diverse health care professionals working in the hospital and rated “valuing relatives” as “somewhat relevant”. The reason behind this is that the patient should be the focus of attention from health care professionals. Furthermore, the impact on the patient and the responsibility of health care professionals (e.g., increase patient safety, provide professional care for people with dementia, and shorten the hospital stay) were reasons why the DFH characteristics were rated as relevant. DFH characteristics would also have an impact on the health care professionals and on their work, such as easing their workload, reducing their burden, improving multiprofessional collaboration or contributing to the professionalization of the nurses.

Modification of DFH characteristics

Modifications were made at the level of subcategories, aspects, and their descriptions (Table 2). A detailed description of the modifications of the characteristics and the content of the discussion are presented in Table 4.

Table 4 Modification of the DFH characteristics and content of the discussion
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Modification of subcategories

All subcategories of the characteristics were seen as necessary for a DFH, and no deletions were made at this level. New subcategories were added to two of the six characteristics by the dementia experts. The subcategory “social contacts/social environment” was added to the characteristic “environment”, reasoning that conversations and contacts with other people are important for the patient to feel comfortable. “Consideration of religion and culture” was added to the characteristic “valuing relatives”. The original subcategory “always welcome” of the characteristic “valuing relatives” was renamed “welcoming culture” because the presence of relatives should be assessed individually, depending on the patient’s reaction, the burden on the relatives and the other patients.

Modification of the aspects describing subcategories

Some aspects of subcategories were deleted (n = 1), added (n = 6), renamed (n = 1) or merged (n = 2). In the subcategory “staff” (characteristic: “continuity”), the aspect “same staff” was proposed to be deleted, as according to the professional dementia experts, this is not feasible in health care practice. Rather, several nurses, who substitute for each other and know the patient should care for him or her. Additionally, in several subcategories, aspects were added, such as, for example, in the subcategory “independence and safety” (characteristic: “environment”), the aspect of “access to telephone/mobile phone” was added so that the patients could contact their relatives at any time. Especially since the outbreak of COVID-19 and the associated visiting restrictions, this was particularly important for people with dementia according to professional dementia experts. Moreover, the aspect “relatives” in the subcategory “knowing the person” (characteristic: “person-centeredness”) was given another German word for relatives, which includes other close persons such as friends and neighbors in a broader definition of “relatives”. The aspects “habits” and “preferences” of the subcategory “knowing the person” (characteristic: “person-centeredness”) were perceived as duplications and were merged.

Some aspect descriptions were modified by deleting (n = 2), adding (n = 7), or changing (n = 5) content. For example, cognitive training in the aspect “prevention, treatment & care intervention” (subcategory: “How? Method”, characteristic: “consideration of phenomena within dementia”) was deleted because, according to the dementia experts, it cannot be implemented in all departments in hospitals. The description of the aspect “relatives” (subcategory: “knowing the person”, characteristic: “person-centeredness”) was expanded to include that not only knowledge about the social situation of the patient but also information such as occupation or social status of the relatives is necessary to be able to understand them better. The professional dementia experts added to the description of “involvement” (subcategory: “multiprofessional”, characteristic: “knowledge and expertise”) the involvement of nursing aides and specialized nurses for geriatrics. The description of the aspect “as a partner” (subcategory: “recognition”, characteristic: “valuing relatives”) was suggested to be changed, as relatives should not be seen as partners in the care process to prevent them from feeling obliged to take over care in the hospital. Another difficulty in seeing relatives as partners in the care process, according to the professional dementia experts, is that the structured work of hospital staff is opposed to the individual care and expectations of relatives.

Prioritization of the six DFH characteristics

A total of 15 of the 16 professional dementia experts returned the questionnaires. Five of the 15 returned questionnaires were included in the analysis of prioritization of the DFH characteristics. The other questionnaires were not analyzable due to multiple answers. Four out of five dementia experts ranked the characteristic “knowledge and expertise” as the top priority, followed by “person-centeredness” (n = 3) and “continuity” (n = 3). The results of the ranking of the characteristics are shown in detail in Table 5.

Table 5 Ranking of the most important characteristics
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Feasibility of the DFH characteristics in German hospitals

During the workshop, the feasibility of the characteristics was repeatedly mentioned by the professional dementia experts, and various influencing factors were described in the plenary discussion. For the implementation of the characteristics, time and staffing were seen as essential. In addition, rigid and absent structures and processes were described as barriers where nurses had limited spheres of influence. Lack of professionalization of nursing was mentioned in relation to the area of responsibility and the perception of nurses. The nurses feel that their profession is not valued by physicians. On the one hand, other health care professions (e.g., physicians) define the care of people with dementia and the consideration of dementia during hospitalization as a unique task of nurses. On the other hand, individual tasks are reserved for the physician. For example, sharing a suspected diagnosis and symptoms with other health care providers cannot be done by the nurses and is the sole responsibility of the physicians. Lack of knowledge, lack of interdisciplinary cooperation and agreements, the exclusive focus on the respective departments and care during hospitalization, and the lack of interest of physicians in the phenomenon of cognitive impairment were described as huge barriers.

Moreover, resources and the existing architecture, such as lack of rooms, were also mentioned as barriers. In addition, the increasingly shorter hospital stays and the mostly unplannable hospital admissions due to crises (e.g., falls) were described as negative factors influencing the implementation of the DFH characteristics. The personal commitment, interest and motivation of the individual health care professionals were listed as highly relevant facilitating factors.

All 15 returned questionnaires were included in the analysis of the feasibility rating of the DFH characteristics. None of the subcategories was assessed as “not feasible at all”. More than half of the subcategories (14 out of 23 subcategories) were rated difficult (dichotomous: very difficult/difficult) to implement by most professional dementia experts. Only the subcategories of the characteristic “valuing relatives” were considered easy (dichotomous: easy/very easy) to implement by most professional dementia experts except for “taking care”. The subcategories “taking care” (characteristic “valuing relatives”), “location” and “being informed” (both within characteristic: “continuity”), “dementia-specific” (characteristic: “knowledge and expertise”), and “attitude toward the person” and “caring for the person” (both within characteristic: “person-centeredness”) were rated as easy or difficult to implement by half or almost half of the professional dementia experts. A detailed presentation of the results is shown in Table 6.

Table 6 Rating of feasibility of the subcategories
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Discussion

The involvement of professional dementia experts at the end of our review process allowed us to discuss and contextualize our findings using their views and experiences with hospitalized patients with dementia in Germany.

All six characteristics of a DFH that we identified in our previous review (continuity, person-centeredness, consideration of phenomena within dementia, environment, valuing relatives and knowledge and expertise) were judged by the professional dementia experts to be (very) relevant for the patients with dementia, their relatives and the health care professionals. The content of the characteristics essentially corresponded to their understanding of DFHs, and only a few modifications were needed. This might be related to the fact that the included descriptions of DFHs in our integrative review were primarily characterized by the perspective of professional dementia experts and health care practitioners [17]. Very little new content was added by the professional dementia experts. This could be due to the already comprehensive review results, which might have narrowed the view and resulted in fewer new aspects. To deepen the perspective of the professional dementia experts detached from the findings, interviews with multiprofessional dementia experts could be useful in the future to complete this perspective on a DFH.

Some subcategories of the characteristic “valuing relatives” were critically discussed by the professional dementia experts. They voiced the concern that phrases such as “always welcome” or “recognition” as a partner in the care process could be misunderstood and may send the wrong message. This could increase the feeling of pressure that their constant presence is required or that they should take over the care of their hospitalized family member. However, studies show that relatives perceive rigid visiting hours as a barrier for accompanying the patient with dementia [24] and that they get the impression that staff do not always welcome their presence [25]. Furthermore, relatives have uncertainties about their role and what is expected of them [24, 26]. In addition, they feel undervalued as a resource, that their concerns are not taken seriously, and that their expertise is not perceived by health care professionals [24, 26]. According to the study by Petry et al. [27], relatives want to play an active role in caring for the person with dementia in the hospital. Accordingly, it is important to involve not only professional dementia experts in the development of DFHs, but also people with dementia and their relatives.

The professional dementia experts discussed the feasibility of the characteristics and rated most subcategories as difficult to implement on average. The reasons given for this were primarily the current conditions in the hospitals, such as time and staffing, as well as structures and processes. These aspects on an organizational level are also described in other studies as barriers and challenges to caring for people with dementia in hospitals [4, 5, 28, 29].

Furthermore, the lack of statutory professional responsibility of nurses in Germany was mentioned as a barrier. On the one hand, dementia is seen primarily as a task for nurses; on the other hand, there is a lack of scope within the statutory responsibility and no recognition of their expertise by other health care professions (e.g., physicians). These findings are confirmed in a study by Pinkert et al. [5], in which nurses described a lack of support and recognition of their work by other health care professionals, as well as conflicts of competence with physicians in the context of caring for patients with dementia. Advancing tasks and statutory responsibilities of nurses [30] and implementing of dementia specialist nurses [31], which is common in other countries, could improve dementia care in hospitals in Germany. Nevertheless, the care of people with dementia in hospitals is a multiprofessional task, for which collaborative strategies such as multiprofessional case conferences [32, 33] or interprofessional education [34] as well as dementia-specific knowledge and awareness of all health care professionals are needed. The discussion with dementia experts and findings of other studies [4, 5, 25, 28, 35, 36] show that both are lacking. However, there are already best-practice approaches implemented in hospitals that address multiprofessional collaboration in the care of people with dementia, such as multiprofessional consultation teams [37].

The knowledge of staff is a key factor in providing quality care for people with dementia to appropriately address the abilities and needs of people with dementia [29]. Knowledge of staff also corresponds to the attitude of staff toward people with dementia and their stigmatization [29]. A study by Keogh et al. [38] shows that staff with prior dementia training are more likely to have positive attitudes toward people with dementia and higher perceived dementia knowledge.

Our findings highlight the need for a multifaceted implementation strategy tailored to the hospital [39,40,41] as well as the participatory involvement of different stakeholders [42] to enable implementation considering existing resources, influencing factors (barriers and facilitators) and the current care situation of people with dementia in the hospital.

Lessons learned when involving dementia experts in reviews

In addition to contextualizing our review results within the German hospital setting, we were able to learn the following insights by involving professional dementia experts reflecting on our review findings:

  • During the discussion, one challenge was to discuss the content of the DFH characteristics in detail, since the focus of the professional dementia experts was directed toward the practicability of the identified characteristics and their current situation in the hospital. This could be due to the already comprehensive description of the characteristics.

  • The workshop required a lot of time for preparation (e.g., preparation of the results in a comprehensible language). We planned a one-day workshop, which in retrospect was too short for a detailed discussion of the comprehensive results of the review. The professional dementia experts commented that they were not used to this kind of theoretical or conceptual reflection and found that the tasks were too extensive and complex for one day.

  • At the same time, the interest of the professional dementia experts in the topic was very high, which was experienced as very positive for the workshop, together with the atmosphere and the small working groups.

Limitations

There are potential limitations that need to be considered. We only used a convenience sample of professional dementia experts as participants in our workshop. Due to COVID-19 pandemic restrictions, the possibility of including a broader range of stakeholders (such as people with dementia and their relatives) was not possible. In our ongoing DEMfriendlyHospital study, people with dementia and their relatives will be interviewed, which will allow us to gain to their perspective regarding a DFH as well. In addition, for our workshop, we recruited participants from only one network of dementia experts. In this network all professional dementia experts have a preexisting qualification as nurses and almost all of them work in the same hospital. The results of our workshop might have been different with a more heterogeneous sample related to hospitals and professional groups.

Regarding the methodological approach of the workshop, it should be considered that the same researchers who conducted the review also conducted the workshop, which may have influenced the discussion. Furthermore, the researchers did not permanently accompany the individual group work, so interesting contents of the discussion within the smaller working groups might have been not documented. In addition, the discussions of the results from the smaller working groups in plenary were not recorded but were protocolled by two people, which may also have influenced the results of the workshop. Another limitation arises from the questionnaires to prioritize the DFH characteristics and rate the feasibility of the subcategories, which were not pretested and could not be explained in detail due to time constraints of the one-day workshop. We were unable to include all the questionnaires in the analysis of prioritization because several of the characteristics were ranked the same. It is unclear whether the prioritization of the characteristics was fully understood or if these characteristics were considered equally important by the professional dementia experts. The small number of analyzable questionnaires may have an impact on the findings. However, our prioritization results indicate a clear trend.

Conclusion

The involvement of professional dementia experts as stakeholders at the end of our review process allowed us to contextualize the review results within the hospital setting in Germany. Our findings clearly illustrate the relevance of the characteristics of a DFH as well as the gap between these and the current situation in hospitals. A perspective for future improvements could be the national dementia strategy [15] in Germany, which has highlighted the importance of dementia friendliness in hospitals. However, the involvement of professional dementia experts also showed that for the development of such a concept, people with dementia and their relatives need to be heard and involved in dementia care research. In addition, for future implementation of DFHs it is necessary to consider the available resources, funding options, influencing factors and the current situation and culture of hospitals and to address these with implementation strategies tailored to the organization.