Design and implementation of the participatory German network for translational dementia care research (TaNDem): A mixed‐method study on the perspectives of healthcare providers and dementia researchers in dementia care research

Abstract Background Currently, there is a lack of interaction between research and healthcare practice. As a result, research findings reach healthcare practice only late, and topics relevant to practice are often not known in research. Involving people living with dementia (PlwD), their relatives and healthcare providers in dementia care research can accelerate this process. For inclusion, firm and reliable structures are needed, which are to be established with the help of the Translational Network for Dementia Care Research in Germany. However, there is only limited knowledge about the priorities, expectations and conditions of stakeholders (healthcare providers and dementia researchers) for such cooperation within a network. Objectives The aim is to gather stakeholders' views on (i) future research topics to be addressed within the dementia care research network, (ii) the nature of collaboration within the network and (iii) the facilitating and hindering factors for establishing such a network. Methods Within an exploratory sequential mixed‐method study, we interviewed 87 stakeholders within eleven semistructured focus group interviews. The interviews were transcribed, pseudonymized and analyzed using qualitative content analysis. The qualitative data were analyzed with MAXQDA. Based on the qualitative results found in the focus group interviews, a supplementary online questionnaire was developed to prioritise and rank these findings afterwards. Results Stakeholders prioritized a comprehensible transfer of research results into practice, increased involvement of PlwD and their relatives (additionally marginalized groups such as people with a migrant background) in research and exchange between researchers. Cooperation should preferably occur in a regional context with local contacts, and the latest research results should be made available via an online database. The stakeholders' time, finances and human resources should be considered. Conclusion Stakeholders have partly similar preferences and goals for cooperation and involvement, emphasizing that such interaction in a network offers the possibility of long‐term, effective collaboration and added value for practice and research. Patient or Public Contribution For this study, dementia healthcare providers and dementia care researchers were asked about their perspectives. Their involvement is further elucidated in the manuscript text.

Results: Stakeholders prioritized a comprehensible transfer of research results into practice, increased involvement of PlwD and their relatives (additionally marginalized groups such as people with a migrant background) in research and exchange between researchers. Cooperation should preferably occur in a regional context with local contacts, and the latest research results should be made available via an online database. The stakeholders' time, finances and human resources should be considered.
Conclusion: Stakeholders have partly similar preferences and goals for cooperation and involvement, emphasizing that such interaction in a network offers the possibility of long-term, effective collaboration and added value for practice and research.
Patient or Public Contribution: For this study, dementia healthcare providers and dementia care researchers were asked about their perspectives. Their involvement is further elucidated in the manuscript text.

K E Y W O R D S
Alzheimer's disease, dementia, dementia care research, network, participatory research, stakeholder involvement

| INTRODUCTION
Population ageing is one of the challenges health systems face globally. This is associated with an increase in the prevalence of people living with dementia (PlwD). 1 The World Alzheimer Report 2021 estimated that more than 55 million people live with dementia worldwide. According to forecasts, the number of people affected will rise to 78 million by 2030. 2 These developments have led to an increased demand for healthcare services, which pose new challenges for managing treatment and care. 3 Consequently, the need for studies evaluating the efficacy and effectiveness of treatment options has increased steadily over the last 50 years. However, it became apparent that due to the dominance of researchers and the lack of interaction between researchers and healthcare providers, there was a discrepancy between the dementia research topics that researchers prioritized and those that were needed in practice. 4 Another problem is the failure to translate research into practice and policy. As a result, it is impossible to ensure that effective and cost-efficient programmes, services and medicines reach all who need them, and health professionals cannot achieve the level of care they aspire to. Consequently, the interest in transferring knowledge into practice has increased drastically. 5 Participatory research aims to actively involve people directly or indirectly affected by a disease such as dementia in research and to work with them as partners instead of considering them only as participants. 6 A participatory approach offers the possibility of linking scientific and practical perspectives. 7 Public participation in research is essential to support the development of care management solutions. 3 The involvement of the general public ('patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services' 6 ) is desirable both for methodological reasons, as this leads to higher-quality research with greater impact, and for ethical reasons, as people affected by research have a right to have a say in what and how research is conducted. 8 In the United Kingdom 9 and Canada, 10  another study looked at the challenges of working across networks due to differences between Canadian provinces and highlighted the need for consistent and collaborative working between individual health research and healthcare providers. 12 So far, evidence is limited on the most effective methods of involving the public in health and social care research. 13 This evidence needs to be strengthened significantly. 14,15 Despite the list of research priorities in dementia care published by the World Health Organization, which explicitly emphasizes the perspectives of researchers and stakeholders, 16 there is a lack of studies on research priorities in dementia research in the context of country-specific network structures. 3 To our knowledge, only one study exists in Germany, 3 of which surveyed 16 healthcare providers about their research priorities. Furthermore, the perspective of healthcare providers as a separate group is rarely addressed in existing studies. 3 Therefore, the evidence around healthcare providers' views needs to be significantly expanded. Furthermore, strategies are required to enable sustainable cooperation in a national context because various research results [17][18][19][20][21][22] show that measures for better coordination of dementia care can be a meaningful instrument in healthcare and can sustainably improve the health and well-being of those affected.

| Study design and sample
We conducted an exploratory sequential mixed-method study  In addition to the main questions in each category, more detailed sub-questions were formulated in advance, which could be asked during a break to stimulate the conversation further. An approximate time frame was set out for each main category so that as many questions as possible could be asked over 90 min. We asked all respondents to fill out a follow-up contact form in case they wanted to participate in the online survey afterwards. The semistructured interview guide is shown in Appendix (Supporting Information: Table 1). representatives of the other DZNE sites participated in these online focus group interviews but not as an interviewer. All interviewers have previous experience in conducting qualitative interviews. [24][25][26][27][28] We ran the interviews from September to November 2021.

Each focus group interview included
The interviews started with an introduction of the interviewers and a subsequent re-explanation of the procedure and the network's goals to provide a common basis on which ideas can be developed.
All participants were made aware of the voluntary nature of this interview and the possibility of interrupting or terminating the interview at any time. All participants were asked to comment on each question to reflect as much diversity of opinion as possible.

| The online survey
The guided focus group interviews were followed by the quantitative part, in which the responses from the respective topic areas were prioritized through an online survey. To quantify the priority of the preferences elicited from the guided interviews, an online survey was subsequently created using the tool 'Lime Survey'. 29 The survey included a selection of the three topics mentioned (content, network infrastructure and implementation), whose qualitative relevance was chosen through internal discussions within the research team. The first topic area, 'expectations', was not explicitly mentioned individually, as it was primarily used as a conversation starter and an opportunity for brainstorming. The statements in this area could very well be assigned to the 'content' category.
The codes that occurred most frequently per category were used for the online survey. Statements that occurred least frequently were not included in the online survey but were considered elsewhere in the design of the network. The survey aimed to rank the statements in each of the three categories to identify which thematic areas and collaboration factors are most important to the majority or should be implemented quickly.
We assigned topic-specific subcategories to the three categories (i) content, (ii) network infrastructure and (iii) implementation to make the online survey clearer.

| Data analysis
The interviews were audiotaped and subsequently transcribed by  Table 2). After about four rounds of discussion between A.S. and M.M.H., all codes were merged, and a common file was created.
We then conducted a descriptive analysis (frequency) of the online survey results using Microsoft ® Excel.

| RESULTS
The  Stakeholders hope that this type of networking will lead to an intensification of care research, better access to data and PlwD for new studies, an investigation of regional differences in the care situation, greater involvement of relatives and an efficient assessment of dementia-specific facilities (Supporting Information: Table 3 Table 3, row 5).

| Preferred elements of the network infrastructure
The prioritization results showed that every third respondent (36%) favoured future regional networking through local face-to-face meetings. Most stakeholders (33%) could also imagine a network meeting of all members once or twice a year. However, just as many stakeholders (31%) were also prepared to participate in regular virtual working group meetings and thus facilitate a simple, supraregional exchange (Supporting Information: Table 3, row 6).
Stakeholders also stated that a regular exchange could be ensured via a communication platform with a chat forum (30%).
The latest information from the network could be made available to network members via a newsletter (29%). The communication option considered most important by the majority (40%) is a database that contains the latest research results. It can be accessed at any time (e.g., via the website) (Supporting Information: Table 3, row 7).

| Factors mentioned as supportive or hindering network implementation
The respondents felt that respect, trust, transparency and the recognition of competencies are important for long-term cooperation. Furthermore, common goals and principles should be defined in advance for a successful network implementation (ranks 2 and 3).
Stakeholders rated the availability of regional network contacts as the most important factor in this context (rank 1). Successful SCHARF ET AL. | 1013 cooperation is made easier when the tasks of the stakeholders in the network match their competencies and the participants recognize an added value for their work (Supporting Information: Table 3, row 8). It was also considered very important that principles and goals are drawn up jointly and at eye level and that a concrete plan for further action is set up in advance (Supporting Information: Table 3, row 9).
The main obstacles mentioned were personnel, financial, and time limitations of the stakeholders (Supporting Information: Table 3, row 10). Furthermore, it was emphasized that the network should avoid being anonymous and poor accessible for individuals. Moreover, the network should not duplicate existing structures (e.g., Local alliances for people with dementia, the Alzheimer Society). TaNDem should rather build on and complement existing network structures (Supporting Information: Table 3, row 11).
Regarding their contribution to the network, stakeholders can imagine acting as contact persons, helping to mediate between research and practice and providing support in terms of public relations. On the one hand, they see opportunities to use their input in the network for their workplace, and on the other hand, they also emphasize time limitations and resource capacities.
Examples of focus group interview results are listed in Table 1, and exemplary prioritization results are in Table 2.

| The nature of collaboration in a future dementia care research network
Regarding the type of cooperation, a regional reference is necessary for successfully implementing the TaNDem network. This can be through regional meetings or by assigning a local contact person. However, it also became clear that the stakeholders are willing to network virtually and supraregional, for example, through virtual working group meetings, web-  Topics related to healthcare • Regional comparison of care situations • Evaluation of the efficiency of dementia-specific facilities and measures • Improvement of hospital discharge management • Development of care standards/guidelines for the care of people with dementia • Attention to less-considered groups of people (e.g., dementia and migration) • Support services for relatives • Focus on person-centred care • Contact points for early diagnosis and local counselling centres • Further training for professionals and information courses for people with dementia and relatives • Establishment of evidence-based care models in practice Preferred elements of the network infrastructure • Fixed regional and supra-regional contact persons and responsible persons • Annual (virtual) national and regional network meetings • Communication platform or exchange forum for network members as well as information channels via newsletters • Database with the latest studies and research results

Factors mentioned as supportive of network implementation
• Local, regional contact person • Building trust and cooperation at eye level • Division of labour between external and internal actors as well as agreement on the scope of tasks and competences • Uniform representation vis-à-vis health policy • Public communication/public relations, as well as information and social sensitization in the field of dementia (public relations) • Joint definition of principles and common, concrete goals • Added value recognizable for own work Compared to the German study by Kowe et al., 3 this additional information could be gained because we involved more participants in this study, which were distributed throughout Germany. Bringing together stakeholders distributed throughout Germany could, for example, address the desire for a regional comparison of care situations.
In addition, due to the involvement of many stakeholders with a wide range of professional backgrounds, less frequently represented topics, such as the involvement of PlwD with a migration background or Down syndrome, could be put on the agenda.
T A B L E 2 Results of the quantitative survey: Stakeholders' needs, preferred infrastructures and facilitating and hindering factors for cooperation in the network.

Topics research and care % Rank
Transfer of results into practice 43 1 Attention to less-considered groups of people 32 2 Regional comparison of care situations 25 3

Topics research
Intensification of care/provision research 37 1 Facilitated communication of data and persons for care research 32 2 Evaluation of the efficiency of dementia-specific facilities 31 3

Topics care
Support services for people with dementia and family carers 34 1 Contact points for early diagnosis 24 2 Focus on person-centredness (individualized care) 21 3 Guidelines for the care of people with dementia 21 4

Research and care offers
Collected presentation of offers 40 1 Informing/social sensitization in the area of dementia 35 2 Public relations 25 3

Research offers
Simplified access to research knowledge 32 1 Representation vis-à-vis politics and health insurance funds 24 2 Support in the search for cooperation partners 23 3 Research advice (exchange between researchers) 22 4

Care offers
Information courses and counselling centres for people with dementia and relatives 38 1 Dementia-specific training for caregivers and care facilities 31 2 Offers to relieve the burden on relatives 31 3 Coordination and cooperation: Types of meetings

| Limitations
However, this study also has several limitations. When looking at the prioritization results, it becomes clear that the topics have similar values in some cases, and thus, no ranking can be formed.
One limitation of the study is, therefore, that the respondents were forced to rank the topics, even in cases they considered several issues to be equally important. However, the prioritization is only a supplement to the qualitative results of the focus group interviews. It mainly serves to identify whether certain aspects have been given a high priority across stakeholders.
Since participation in the focus group interviews was based on voluntariness, it is conceivable that mainly people who have already dealt with the topic more closely and tend to have a positive attitude towards cooperation have preferably participated, and thus the diversity of opinions of the care practice and research may not be fully represented.
A limitation of the mixed-method study design is the possible loss of depth of the qualitative data through quantification. 36 It cannot be ruled out that individual themes have been lost through the aggregation and rephrasing of the results of the focus group interviews. However, quantifying qualitative data is a complementary step in the evaluation to broaden the perspective and gather complementary views for interpretative analysis. 37 Furthermore, due to the pseudonymization of the data, no conclusions could be drawn about the profession, regional differences or, for example, a person's age. For this reason, this work has a more quantitative than qualitative character. However, the promise of pseudonymizing personal data probably led to a higher likelihood of participation.
Furthermore, the online format may have created some limitations. Social interaction may be restricted by such a format, for example, by not being able to keep eye contact during the interviews or by only one person having the opportunity to speak at a time. However, in our case, these limitations should have little effect, as care was taken to ensure that all people said and had roughly similar amounts of time to speak. An attempt was made to avoid a limitation due to the interviewer effect by having only one person interview each of the two DZNE sites.

| CONCLUSION
In summary, this study provides insights into which other, so far rather rarely researched but very essential, topics could be brought to the forefront of dementia care research. Likewise, to our knowledge, it becomes apparent which measures need to be taken to enable successful participatory collaboration and networking in the national context in Germany. If these measures are implemented, the TaNDem in Germany represents an opportunity to establish a link between the different fields, with significant potential to provide added value for all involved. The results form the basis for the further design and establishment of the network.
Furthermore, additional research is needed on methods and strategies for the successful participation of PlwD and their relatives in research, 15 as well as stakeholders, to make research more dementia-friendly and needs-based. Furthermore, in future research, one could pursue an even stronger qualitative approach and analyze personal data (after prior consent) to evaluate information on regional differences, age, gender or occupational group.