Mapping Collaboration and Coordination of Health and Care Services for Older People with Dementia: A Scoping Review

Österholm, Johannes; Larsson Ranada, Åsa; Nedlund, Ann-Charlotte

doi:https://doi.org/10.1155/2023/8858773

Health & Social Care in the Community

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Abstract Introduction Materials and Methods Discussion Conclusion Appendix Conflicts of Interest Acknowledgments References Copyright Related Articles

Review Article | Open Access

Volume 2023 | Article ID 8858773 | https://doi.org/10.1155/2023/8858773

Mapping Collaboration and Coordination of Health and Care Services for Older People with Dementia: A Scoping Review

Johannes Österholm,¹Åsa Larsson Ranada,¹and Ann-Charlotte Nedlund²

Academic Editor: Qing-Wei Chen

Received27 Apr 2023

Revised20 Oct 2023

Accepted09 Nov 2023

Published27 Nov 2023

Abstract

Responsibility for health and care services for people with dementia is often divided between various professionals, agencies, and authorities, causing a fragmentation of care and an unclear division of responsibility between different stakeholders. In relation to this, collaboration and coordination of health and care services are often described as vital for catering to diverse needs and to provide adequate support. The aim of this scoping review was to map how different health and care agencies collaborate and coordinate services for older people with dementia. Joanna Briggs Institute’s proposed methodology for scoping reviews was used, and systematic searches were carried out in six databases. A total of 59 articles published within the last 10 years were included based on certain eligibility criteria. The Research Pyramid was used to critically appraise these articles, suggesting that available research is of moderate quality. The descriptive content analysis of the articles revealed eight categories describing the characteristics of collaboration and coordination for people with dementia, as presented in previous articles. These characteristics are described in terms of different barriers, the function of the care coordinator, assessment and planning to provide services, interprofessional collaboration, information sharing, knowledge needed to navigate a complex health and care system and understanding of dementia, and personalisation of care. Engaging care coordinators with diverse competencies to address both medical and social care needs is essential, especially since people with dementia experience multiple and complex needs. It is also important to explain and visualise available services and when these services are suitable for implementation. Knowledge about dementia is necessary to empower people with dementia in everyday life situations.

1. Introduction

A commonly discussed issue, in countries around the world, is the fragmentation of health and care services for older people [1–3]. To address this fragmentation, there is an urgent need to shift the focus from health and care systems designed around diseases and institutions towards systems and practices designed for people and communities to achieve health and well-being in accordance with personal preferences and local prerequisites [4]. This shift in focus is acknowledged by the integrated care approach; “integrated services are health services that are managed and delivered so that people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation, and palliative care services, coordinated across the different levels and sites of care within and beyond the health sector, and according to their needs throughout the life course” [5].

Collaboration and coordination are aspects often addressed and raised as vital to achieve and provide continuity and integrated and seamless care. As pointed out by The World Health Organisation (WHO) [5], collaboration entails activities that cuts across sectors, organisations, providing agencies, professional responsibilities, between providers and users, and other types of boundaries. Furthermore, coordination of care is described, by WHO, as “a proactive approach to bring together care professionals and providers to meet the needs of service users to ensure that they receive integrated, person-focused care across various settings” [5]. Accordingly, collaboration and coordination of care can be regarded as related to the provision of services both within and across various agencies where the patients receive the continuum of health and care services according to their need. In WHO’s framework on the integration of care of older people [6], it is highlighted that actions are needed to integrate and implement care for older people at multiple levels: on the system level (e.g., financing health and care services, available services, accountability systems, guidelines, and regulations), the service level (e.g., coordination of services delivered by interdisciplinary providers), and the personal level (e.g., patients’ goals, providing service to maximise capacity, and functional abilities of the older person). Thereby, collaboration and coordination of health and care services can refer to services provided by different professionals with various disciplinary backgrounds, working either on the same or on diverse levels within the same or at different health or care agencies.

Dementia is an umbrella concept used for cognitive and behavioral symptoms associated with different progressive brain diseases affecting higher cognitive functions (such as Alzheimer’s disease, vascular dementia, and Lewy body dementia). Later stages of a dementia disease are often associated with multiple and complex health and care needs [7]. In the coming years, the number of people with dementia is expected to grow [6, 8]. Consequently, stress will be put on health, social care, and welfare systems regarding challenges in prioritising due to limited resources [9]. That is, care agencies must know how to use resources in a fair, appropriate, and effective way and to do what is most relevant for catering to the person’s health and care needs. Therefore, different care agencies, with various responsibilities, must collaborate and coordinate their services [10] to overcome the risk that people with dementia, and their carers, do not receive the formal support that they need or are entitled to [11]. Considering the widespread consensus on the significance of collaboration and coordination in achieving integrated care, the aim of this scoping review was to map how different health and care agencies collaborate and coordinate services for older people with dementia.

1.1. Previous Research on Collaboration and Coordination regarding People with Dementia

Previous research on coordination of health and care services for older people with dementia has primarily been conducted from the perspective of case management, also referred to as care management [12, 13]. Case management is a complex intervention used to identify various needs and to provide or coordinate medical and community services [14, 15]. A commonality of case management is that one key person coordinates and monitors all support and services provided to the service user [16]. The impact of case management is diverse and varies according to previous research [10, 17]. Probably this is because case management is implemented differently in various countries or contexts with different management systems, funding policies, and cultural variations governing the process [10, 17]. In addition to this, the clinical setting has consequences for how case management is implemented [13]. For example, additional support such as cognitive stimulation, stress management, and psychological support might be provided at memory clinics but not provided at a primary care setting [13, 14, 18].

There are some previous reviews summarising the evidence on interventions aiming at coordinating health and care services for people with dementia [10, 12], but most reviews on collaboration and coordination of health and care services do not single out a specific target group. Røsvik and colleagues [12] mapped and examined research, in a scoping review, on how access to and use of formal community services could be improved through case management, monetary support, enhancing referral, and information sharing. In the process of coordinating health and care services for people with dementia, a variety of professions (e.g., social workers and nurses) or interprofessional teams are involved [10, 14, 15, 19, 20]. The disciplinary background of the professionals and their organisational affiliations have also been described to have consequences for what is pointed out as important in the process of coordinating care for people with dementia. Furthermore, interprofessional teams working collaboratively could result in more efficient primary, secondary, and tertiary care for people with dementia [10]. Information sharing between different agencies and different care providers with various disciplinary backgrounds has been identified as vital when coordinating services for people with dementia to provide appropriate support, especially in terms of communication between different agencies and professionals [14, 15, 19]. Less is known about the actual collaboration and coordination taking place between different agencies of professionals working together either at the same or at diverse levels in health, social care, and welfare system and what the consequences are for the individuals concerned and their significant others.

Even though there is a legal requirement in many countries for different care agencies and various professionals to collaborate and coordinate their services or activities [5], this does not seem to achieve the expected result—to create good, fair, accurate, and effective provision of care for older people [4, 5]. Therefore, more knowledge is needed on how different care agencies collaborate and coordinate health and care services for people with dementia.

2. Review Questions

The aim of this scoping review was to map how different health and care agencies collaborate and coordinate services for older people with dementia. RQ1: what characterises collaboration and coordination between different care agencies regarding people with dementia? RQ2: what are the outcomes reported following collaboration and coordination of health and care services for people with dementia? RQ3: what are the experiences described by different agency representatives, service providers, service users, and significant others regarding collaboration and coordination of health and care services for people with dementia?

3. Materials and Methods

3.1. Study Design

A scoping review has been carried out following the methodology proposed by Joanna Briggs Institute (JBI) [21], reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) [21–23]. A protocol presenting the design of this scoping review in more detail has previously been published [24].

3.2. Search Strategy

An initial limited search [21] was conducted in PubMed and CINAHL to identify and determine search terms. The final search for this scoping review was then conducted in PubMed, CINAHL, Embase, PsycInfo, Scopus, and Web of Science using the search terms reported in Appendix A. The search terms and the combination of search terms were adjusted according to the instructions of each database. The final search was conducted on the 6th of April 2022.

Neither a citation search nor a reference list search was conducted. This was agreed upon among all authors, since the number of articles included was judged to be extensive and sufficient to address the aim and the research questions of this scoping review.

3.3. Study Eligibility

The inclusion criteria in this scoping review were that the studies should be empirical (conducted with qualitative, quantitative, or mixed methodology) and published in peer-reviewed journals in the English language. Study protocols, reviews, letters to editors, opinions, doctoral dissertations, and conference abstracts have been excluded. A 10-year limit, considering the publication date of articles, has also been applied (i.e., 2012 and forward) to include contemporary research in this scoping review.

3.4. Search Outcome

All potential studies were imported to an EndNote 20© library. EndNote 20© was utilised to identify and remove duplicates of articles. EndNote 20© was also employed to identify and exclude articles based on their publication years and type of publications (i.e., study protocols, reviews, letters to editors, opinions, doctoral dissertations, and conference abstracts). Inclusion of articles was then based on titles and abstract screening and full text reading (JHÖ and ÅLR). All included articles were then retrieved in full text and imported to an EndNote 20© library. A full text reading was conducted of all included articles at this stage to ensure that articles were relevant in accordance with the eligibility criteria of this scoping review (JHÖ and ÅLR). During the article selection process, disagreements in article inclusions were discussed among all authors until consensus was reached. The study selection process is reported in a PRISMA flow diagram [25] (Figure 1). A list of articles excluded after full text reading can be obtained from the authors.

3.5. Data Extraction Process

Data of relevance for this scoping review’s aim and research questions were extracted from the included articles. A Microsoft Excel© spreadsheet was used for organising the extracted data, including the following parameters: (1) basic characteristics of the included studies (author(s), year of publication, country of origin, aims/purposes, and methodology/method); (2) different stakeholders represented/presented in the study (i.e., from which perspective is collaboration and coordination studied, who are participating in the study); (3) intervention or model of collaboration or coordination; and (4) outcome or key findings of the intervention/model.

3.6. Critical Appraisal

All included articles were critically appraised (ÅLR) and then verified (AN and JHÖ), using the Research Pyramid Model, which allows articles with different study designs to be critically appraised [26]. The Research Pyramid Model is illustrated as a pyramid, where descriptive research forms the base of the pyramid, and the three sides represent experimental research, outcome research, and qualitative research. Each side and the base are divided into four levels used to appraise the evidence. Evidence grading, according to the JBI recommendations for scoping reviews, could either be based on the title, abstract, or full text of included studies [21]. The grading of the evidence has been based on the included articles’ abstracts and is presented both in text and tabular form in the Findings section.

3.7. Data Analysis and Synthesis

A descriptive and inductive content analysis [27] was performed. This analytical approach was chosen because scoping reviews typically do not synthesise the results of the articles included [21]. The extracted data in the spreadsheet were coded independently by all authors. In this coding procedure, extracted data were labelled with a shorter sentence or a single word with the intention of shortening the extraction but keeping the principal content of these kinds of extraction. All codes of the extracted data were then discussed by all authors together. These codes were then compiled into categories of relevance for what characterises collaboration and coordination of health and care services for older people with dementia. Eight categories emerged and could be identified in the analysis. Discussions among all authors have occurred continuously throughout the analytical process. This procedure was chosen to ensure rigidness in the analysis, and that the findings emerged from the included articles and not a single author’s preunderstanding of the studied topic at hand.

4. Ethical Considerations

Scoping review does not require approval from a human research ethics authority as it does not involve human participants.

5. Findings

In this section, we will present the characteristics of the included studies, the grading of the evidence, and what characterises collaboration and coordination for people with dementia. Based on the content analysis, we identified eight categories of what characterise collaboration and coordination for older people with dementia. These categories are presented in Section 5.3.

5.1. Characteristics of the Included Articles

In this scoping review, 59 articles were included. Of these articles, 27 had qualitative design, 20 quantitative design, and 12 mixed method design. The qualitative data were collected using interviews (21), focus group interviews (10), or observations (4). Seven (7) of the quantitative studies were randomised controlled trials. Twenty-seven of the articles included persons with dementia as participants (among these, eight studies included dyads). Health or social care professionals were participating in thirty-seven of the included articles. More characteristics and the main findings of the included articles are presented in Table 1.

Most of the articles included were conducted by researchers located in Western countries (27 in Europe and 23 in North America), with additional studies conducted in Asia (4) and Oceania (3). Additionally, a few articles were co-authored by researchers from Asia and Europe (1) and Oceania, North America, and Europe (1).

5.2. Grading of the Evidence

About half of the included studies (n = 29) were categorised according to the Research Pyramid Model [26] as qualitative research (27 qualitative methods and two with a mixed method design), all at level 3 (group qualitative studies with less rigor). Thirteen (13) articles were categorised as outcome research, with ten (10) at level 3 (case-control studies, preexisting group comparisons) and three (3) at level 4 (one-group pre-post studies). Ten (10) articles were categorised as descriptive research, nine (9) at level 3 (multiple-case studies, normative studies, descriptive studies) and one at level 4 (individual case studies). The remaining seven articles were categorised as experimental research, five at level 3 (controlled clinical trials) and two at level 2 (individual blinded randomised controlled trials). Thus, 53 articles were on level 3, four on level 4, and two on level 2, suggesting that the evidence for the articles included must be deemed as moderate (see Table 2).

5.3. Characteristics of Collaboration and Coordination for People with Dementia

Various characteristics of collaboration and coordination of health and care services for older people with dementia were identified through the inductive and descriptive content analysis. These are presented in Table 3.

5.3.1. Structural and Organisational Barriers Hindering Collaboration and Coordination

Consistency and stability over time were identified as central aspects when coordinating health and care services for people with dementia [28]. There are several structural barriers presented in the included articles such as lack of structured documentation [29], lack of shared information-technology platforms between various organisations or agencies [29, 30], lack of clarity [31], difficulties in coordinating multiple schedules, inadequate infrastructural support, and insufficient communication among team members [32, 33]. Staffs’ lack of skills, training, and limited time for reflection or feedback were also raised as structural barriers [31].

There are also organisational barriers described in the included articles, hindering collaboration and coordination of health and care services for older people with dementia. These include lack of sustainable funding and consistency [30, 33–35], lack of financial compensations for collaborative practices, lack of designated time [36, 37], restrictive commissioning frameworks, constraints in resources [32], competing priorities in everyday work [33], competition among various care agencies [34], a centralised care system [38], and blurry boundaries of responsibility in-between different organisations or agencies [39, 40]. Other organisational barriers consist of inflexible structures and services [36], limited availability of care places [39], and lack of service integration [41]. One article [42] showed that the organisational features did not affect care giver burden.

5.3.2. Care Coordinator as a Function for Enhancing Collaboration and Coordination

Many articles took their point of departure in a key person [43, 44], often referred to as a care coordinator, case manager, care manager, social worker, or admiral nurse (i.e., registered nurses who are specialised in dementia care), that served an important function for enhanced collaboration and coordination of services. Several tasks for the care coordinators were mentioned in the articles, such as making various organisations’ responsibilities explicit, referring the person with dementia to the right care provider, giving recommendations on how to proceed, support in contacts, and creating a structure or a timeline for when certain tasks should be carried out or when support should be implemented [37, 45]. Furthermore, as part of their function, care coordinators advocate the necessity of services [46] and provide emotional support to the person with dementia [47, 48].

When services were provided by different organisations or care agencies, the care coordinator’s function was to link the person with dementia, in relation to their care needs, to relevant care providers [37, 49, 50]. On the contrary, imbedded, or integrated care coordinators within an organisation or a care agency were described to work intensively with the same patient over time, in close collaboration with other health care professionals at the same agency [40, 50].

In some articles, care coordinators with medical knowledge, working in a health care organisation, were addressing medical needs, while care coordinators within community services were responsible for catering to social care needs [51–56]. Care coordinators representing a medical discipline were presented as having additional working tasks, which might be prioritised over work related to coordination of care [50].

5.3.3. Assessments and Planning to Provide Services in Relation to their Care Needs (Current)

Various assessments and interventions were prominent components of collaboration and coordination of health and care services for older people with dementia described in the articles. A structured assessment was depicted as important to ensure that care needs were not missed when coordinating services [52]. Computer-based systems [57] and standardised protocols provide a clear division of responsibility among all professionals [53, 54, 58] to address both medical and non-medical needs [53]. Standardised protocols were also used to ensure an equal distribution of services, to support the care coordinator in prioritising various patients [37], and to facilitate for care coordinators to be proactive in their work rather than acting on crises as the disease trajectory progresses [59].

Since dementia is a progressive condition, the assessment of the person’s needs of care must be continuously updated, discussed, and reported back to the patient and their significant others to ensure that relevant support is still provided [49, 53, 54, 60–62]. Telephone [53, 54, 63] or e-mail contacts [53, 54] were described as being used to regularly follow up the patient’s disease trajectory. Changes in health and care needs for people with dementia often occur swiftly, which is why there might be limited possibilities to plan services or support in advance [64]. At an early phase of the disease, coordination of different services might be easier than at later stages when the patient’s condition has worsened [65]. There are examples of a delayed implementation of services with the consequence of having a crisis-driven process rather than a need-driven process [36, 44].

5.3.4. Interprofessional Collaboration to Address Multiple Health and Care Needs

Many articles took their point of departure in interprofessional collaboration and coordination of services for people with dementia [35, 39, 41, 66]. Diverse concepts were used among the included articles to refer to this such as multiprofessional, multidisciplinary, interdisciplinary, and interprofessional teams. Interprofessional teams were portrayed as a prerequisite for collaboration in dementia care [35, 39, 67] and for providing person-centred care [33, 68]. It was depicted that interprofessional teams provide a broader understanding of the patient’s situation or condition for physicians [63, 66] or for care coordinators [51] that works as a support in decision making of how to proceed with a person’s care needs. Various professional disciplines participate in interprofessional collaboration to provide services [66], bringing their professional competency to the team [67, 69, 70]. Different professionals representing various disciplines might have different understandings or assessments of a person’s health and care needs (and responsibilities), as well as different ideas of how to proceed [71]. There are some hierarchies presented in the included articles associated with interprofessional collaboration among health professionals [65, 72]. For example, the main responsibility for a given care recipient is usually held by a general practitioner who sometimes cannot prioritise participating in interprofessional work, which is why the necessary mandate to make decisions may be missing [65, 69, 73].

Professionals partaking in interprofessional collaboration may be located at various agencies or within the same organisation or care agency [36]. Furthermore, team members tend to appreciate being part of an interprofessional team when coordinating care for people with dementia [51]. Still, little is known about interagency coordination in dementia care [74].

Case conferences, as part of interprofessional collaboration, facilitate the coordination of health and care services for people with dementia. At case conferences, key responsible professionals meet to discuss patients’ needs, but also to share information about patients [75]. At these meetings, team members discuss, plan, and make collective assessments on the needs of people with dementia and on how and when to proceed [73].

5.3.5. Communication as a Means of Sharing Information and Building Relationships

Communication was identified as being relevant for the collaboration and coordination of health and care services for older people with dementia. An aspect pointed out as of importance was information sharing between various organisations or care agencies [39, 51] to ensure that relevant support was administered by staff with the right competencies [39, 62], that knowledge about the patient was shared among all involved professionals [59], and that they work towards the same preferred (by the patient) outcome [51, 75]. One study also identified the importance of communication by using a mobile application for information sharing (about medication, contacts with health care professionals, or changes in the person’s health condition) among significant others [76].

Another aspect relating to communication was the importance of building relationships such as creating an alliance with the person with dementia when coordinating services [36, 77], to signal an interest in the family’s individual circumstances [48]. When interacting with the person concerned, health and care professionals should ensure that a relationship is developed to facilitate participation in the process of coordinating care [77] and to ensure person-centred care [60, 67, 72]. If the person living with dementia experiences an encounter with the professional or the use of a service negatively, further requests for support or the person’s compliance with care plans could be affected negatively [44]. The use of visual prompts, but also reduction of external stimuli, was described as important to facilitate communication [59]. Facilitation of communication between lay persons and professionals might also be needed since professionals often use complex terms in their communication [78].

5.3.6. Knowledge to Navigate a Complex Health and Care System

When people with dementia or their significant others need support, they must navigate in a complex health and care system [43], often with limited knowledge and information about the system [47]. Professionals experience that when people with dementia or their significant others request support, they often do not know what to apply for or what services are available [44]. In relation to this, guidance and advice may be given by professionals with knowledge about the system on how to proceed [62, 79, 80] and how to support decision making among people with dementia [38]. Knowledge about the health and care system seems to some extent to be of greater importance than professional training (such as being a trained social worker or nurse) [59]. Still, the professional competencies associated with various disciplines have consequences as medical health care professionals and social workers address different forms of needs (i.e., medical, or social care needs) among people with dementia [51].

5.3.7. Knowledge and Competencies about Dementia

Knowledge and competencies related to dementia diseases and how to approach people with dementia, among both professionals and caregivers, were highlighted as important for the collaboration and coordination of health and care services for people with dementia. Special competencies and skills of professionals have been found to be important [55, 60] and necessary for providing accurate care and support [31, 48]. For example, specialist clinics were described as a resource to increase competencies among non-specialised clinics or practitioners by giving assistance in the care of patients with dementia [30, 81] or consultations for general practitioners from dementia specialists (such as geriatricians) [65]. Furthermore, nurses with specialist training in dementia, in identifying behavioral and psychological symptoms, increase the chance of use of dementia medications [57]. Other competencies depicted as being of importance were interpersonal skills when interacting with people with dementia and advocating that they accept relevant services [72]. These interactional skills also pertain to understanding the diagnosis, as well as how to adjust interaction in accordance with the person’s needs [37, 72].

The dissemination of knowledge and skills based on the caregiver’s preferences and choices has been identified as an important aspect of establishing regular and lasting contact between informal caregivers and professionals [45, 46, 58]. Training of informal caregivers [49] on how to manage dementia symptoms [62, 78] and how to manage stress and self-care strategies [78] was also presented as key in the included articles. The caregivers of the person with dementia could also be thought competencies such as coping skills, communication skills, behavioral management techniques, and problem-solving techniques [45, 47, 58]. Training informal caregivers the skills [73] of how to manage the care of, interact with, and understand people with dementia, reduces perceived caregiver burden [63, 82], depression [78, 82], and visits to the emergency department [82]. On the other hand, an increased understanding of dementia diseases and their consequences among informal caregivers may also increase perceived caregiver burden [83].

5.3.8. Personalisation of Care, Empowerment, and Acknowledging Agency

The aspects of enhancing participation in the decision-making processes and acknowledging the agency of persons with dementia were discussed in the articles included [47, 71]. In these articles, empowerment, inclusion, and participation in the process of coordinating care were described as goals [38, 47, 79], but none of the articles presented these as achieved outcomes. Acknowledging agency was also performed by advocacy [79] and by supporters/advisors through the mechanism of supported decision making [38].

The disease trajectory may have implications for the person’s involvement in the process of coordinating services [54]. Younger patients, and those who reported memory difficulties themselves, exhibited a higher level of engagement in coordinating their care. Nevertheless, for people with dementia to remain motivated to receive or accept support, it is crucial for the time between the decision to implement care and the actual implementation to be as short as possible to minimise the risk of them later declining support [28].

Significant others often advocate for support, frequently at an earlier stage of the disease trajectory than the person with dementia [44]. However, in the process of receiving formal support, significant others may experience a fear of losing control when allowing strangers into their personal space [44]. The role of the family has been emphasised [84], and family case conferences provide an opportunity for significant others to influence the organisation of care and share their understanding of the person with dementia. This understanding can then be taken into consideration when coordinating services [75].

Non-clinical community care coordinators engage in advocacy on behalf of or together with the person with dementia to access support or to address various difficulties encountered when using health and care services [79, 85]. Furthermore, care coordinators working from an office located at, for example, the Alzheimer’s associations, were presented as accessible and easily reachable for people with dementia and their significant others. For care coordinators, splitting their time between an Alzheimer’s association and a clinic made it possible to engage with those receiving services and also interact with professionals responsible for providing or organising health or care services, thereby advocating on behalf of the person with dementia [62, 66, 86].

6. Discussion

In this scoping review, we have mapped research about how different care agencies collaborate and coordinate health and care services for older people with dementia. Most of the articles included in this scoping review were conducted in either Europe or North America. Our grading of the evidence [26] suggests that available research about the topic at hand is moderate. Hence, there is a need for more extensive research with more robust research methodologies in countries with various health, social care, and welfare systems to further our understanding of collaboration and coordination of health and care services for people with dementia.

In the present scoping review, we identified that the care coordinator exercises a function for enhancing coordination of health and care services, but also in relation to facilitate collaboration among various professionals and lay persons when care services are implemented. The function of working as a care coordinator is administered by a key person such as nurses, social workers, or admiral nurses. What is expected of this function differs depending on several factors such as professional training (different skills or what is deemed as important to address) and where the care coordinator is working (e.g., within a team or an agency, between different agencies or authorities, or in an organisation representing civil society). In previous research, the care coordinator has frequently been described to be a case manager, with the main responsibility of coordinating health and care services for people with dementia [7, 87]. Furthermore, the work conducted by case managers differs in implementation due to several factors, such as variations in legislative frameworks governing the process, funding policies, or cultural variations [10, 15, 17]. This warrants further research, both to understand what is expected of a professional care coordinator working with people with dementia and to explore how various structural factors influence their work and responsibilities.

Interprofessional collaboration is highlighted in our findings as being important for the collaboration and coordination of health and care services for people with dementia. Nonetheless, research on how to achieve constructive collaboration and how to organise this work is scarcely addressed. Previously, several studies on interprofessional collaboration and coordination of health and care services have primarily focused on barriers [1, 2, 12, 88, 89], but how to handle these barriers remains to be addressed [83]. Barriers were also a prominent feature in the articles included, such as lack of communication or understanding of various team members’ competences. Further research is needed to study how these identified barriers could be reduced. One approach to overcome some of these structural barriers could be to study how professionals with specific knowledge about dementia could be utilised as a resource for other professionals. Additionally, exploring the use of structured assessments of care needs [90] in the context of collaborating and coordinating health and care services for people with dementia may prove valuable.

Our findings suggest that people with dementia and their significant others need support to navigate the health, social care, and welfare system, as it is often complex in its nature. Furthermore, what support is available and suitable for addressing the health and care needs of the person with dementia and their significant other might be unknown or difficult for them to understand. Dementia is a syndrome associated with, for example, cognitive declines and communication problems [6]. It might, therefore, be difficult for an older person with dementia to know what support or services to request in accordance with their needs [91]. Hence, it falls upon professionals to promote involvement in the decision-making process by providing relevant information in an accessible manner and visualising what support is available and how it could be implemented [92]. This has been briefly mentioned in our findings because little is known about how to organise the provision of such information. This is something that merits further research. However, a characteristic presented in our results is the assessment and planning of services that follow a predetermined structure to ensure that care needs are not missed or overlooked. This might be one way to achieve personalisation of care, as care needs are continuously monitored and assessed throughout the disease trajectory. Nonetheless, flexibility and responsiveness are important in relation to guidelines or predetermined structures to ensure personalisation of care and to prevent integrated care from being provided as a “tick box culture” [90].

Our findings also relate to various professionals with different disciplinary training who are relevant for coordinating care and supporting collaboration between different care agencies. Different professionals have different perspectives and understandings of the characteristics of collaboration and coordination of health and care services for older people with dementia. Many of the included articles take a professional perspective. Therefore, there is a need for further studies that address the collaboration and coordination of services provided by various agencies from the perspective of the person concerned (i.e., the person with dementia). Our findings suggest that various professionals, depending on their affiliations, locations, or professional training, have different starting points in how they approach collaboration and coordination. Since different professionals represent different authorities or care agencies, there is a need for them to convene in various contexts to discuss how to proceed with a person with dementia. Furthermore, the term “location” also pertains to the physical location of the care coordinators’ offices. For example, a care coordinator working from a local civil society organisation could reduce the barrier for people with dementia or their significant others to request or apply for formal support. Our findings suggest that civil society is an emerging stakeholder, facilitating participation for people with dementia in the decision-making process and empowering them as a group that seeks agency by being present in situations where health and care services are coordinated among professional stakeholders. This also underscores the importance of considering local communities to provide integrated care [4].

Personalisation of care, participation in decision making about future services, and empowerment were presented as characteristics in our findings. However, instead of being achieved, these processes were shown as something sought after when coordinating care for people with dementia. In dementia studies, a citizenship perspective has been developed and advocated for in research and practice to explore how empowerment can occur and support people with dementia in using their remaining capabilities to participate in decisions regarding future health and care services [91, 93, 94]. A citizenship perspective entails the empowerment of people with dementia, emphasising the individual’s possibility to be independent, set their own goals, and have control over their own life [95]. Further research is needed to investigate how a citizenship perspective could be applied in the process of collaborating and coordinating health and care services for people with dementia, to align with an integrated care approach.

6.1. Implications for Practice

The findings suggest that the physical location of the care coordinator may reduce barriers for people with dementia when requesting or applying for support. Additionally, a care coordinator’s professional background has implications for the health or care needs they address and how they prioritise various tasks in their daily work. This has implications for both policy and practice, as it might be essential to engage different care coordinators with diverse competencies to address both medical and social care needs, given that people with dementia often experience multiple and complex health and care needs. The significance of establishing a relationship with the person with dementia and their significant others was emphasised in the findings. Communication is crucial for building this relationship. It is also relevant to explain and visualise the services available for the person with dementia to meet their health and care needs and to determine when these services are suitable to implement in their disease trajectory. Given the information asymmetry that exists between professionals and lay person, addressing this gap in knowledge about services is necessary. Furthermore, the findings suggest that specific knowledge and competencies about dementia are needed among both professionals and significant others to support and empower people with dementia in everyday life situations. Therefore, it is important to provide relevant educational efforts and skills training for professionals working in dementia care, as well as for significant others of people with dementia.

6.2. Strengths and Limitations

This scoping review has several strengths but also some limitations. A comprehensive literature search revealed many potential articles to include in the present scoping review. To reduce subjective bias in the article selection process, two researchers independently conducted the selection of articles, which was validated through consultation with the third researcher. Therefore, the approach to including studies for this scoping review was systematic. However, the concept used to inform the search, especially “collaboration” and “coordination,” is often ambiguous with various interpretations. In the process of including articles, an inclusive approach has been applied regarding the terms “collaboration” and “coordination” (see the published study protocol for a more detailed explanation of the concepts used [24]). Consequently, in the articles included, various understandings and perspectives related to these terms are presented. Some of these articles also offer more context and insight into these terms, which is why they are more extensively presented in our findings.

Furthermore, the focus of this scoping review was on empirical literature, and as a result, grey literature was excluded. Consequently, it is possible that not all studies that could have provided additional insights on the topic at hand were identified. Additionally, no reference search or citation search was conducted, despite being planned in the study protocol for this scoping review [24]. This should be taken into consideration, as relevant literature may have been missed.

The analytical process was a collaborative effort, undertaken by all three authors working closely together. This collaborative approach was chosen to prevent any skewed or biased result, which might occur if dependent on any of the researchers’ prior understandings, and to promote alternative interpretations of the included articles.

A critical appraisal of the evidence was performed based on the Research Pyramid [26] on the included articles’ abstracts. During the analytical process, several weaknesses in the abstracts were identified, including vague descriptions of methodology and lack of clarity regarding the number of participants, data collection methods, and analytical processes. As a result, the critical appraisal may have been negatively influenced by shortcomings in the reporting of the design of the included studies in the abstracts.

Finally, the articles included in this scoping review were authored by researchers from various countries, each with its own legislative contexts influencing the practice of collaboration and coordination of health and care services for people with dementia. While this scoping review provides information about the authors’ affiliations, the analysis presented here has not considered the legislative context in which the different studies were conducted. In previous research, it has been noted that the legislative context is often absent or inadequately described, which makes it challenging to apply the results of a study to other settings [10, 17, 88, 96–98]. In future reviews, the analysis of articles could be included based on or analysed with regard to their legislative context.

7. Conclusion

In conclusion, in the qualitative part of this study, we were able to elaborate on the characteristics that have been presented in previously conducted research about collaboration and coordination of health and care services for older people with dementia. Engaging care coordinators with diverse competencies to address both medical and social care needs is essential, especially since people with dementia often experience multiple and complex health and care needs. It is also important to explain and visualise available services to the person with dementia and when these services are suitable for implementation. Specific knowledge about dementia among professionals and significant others is necessary to empower people with dementia in everyday life situations. Through the identification of characteristics described in previous research, we can now better understand how integrated care can be coordinated with the goal of creating the best possible conditions for the persons concerned, including their significant others, and for the professionals. Improved collaboration and coordination not only lead to better and integrated care for the patients but also contribute to more sustainable and robust health and care agencies, thereby strengthening the healthcare system.

Appendix

A. Search Strategy Used in PubMed

Alzheimer disease[MeSH Major Topic]) OR (Alzheimer disease[MeSH Terms])) OR (Alzheimer[Title/Abstract])) OR (((Frontotemporal Lobar Degeneration[MeSH Major Topic]) OR (Frontotemporal Lobar Degeneration[MeSH Terms])) OR (Frontotemporal Lobar Degeneration[Title/Abstract]))) OR (Frontotemporal dementia[MeSH Major Topic])) OR (Frontotemporal dementia[MeSH Terms]))) OR ((((Lewy Body Disease[MeSH Major Topic]) OR (Lewy Body Disease[MeSH Terms])) OR (Lewy Body[Title/Abstract])) OR (Lewy bodie[Title/Abstract]))) OR (((Vascular dementia[MeSH Major Topic])) OR (Vascular dementia[MeSH Terms])) OR ((((dementia[MeSH Major Topic]) OR (Dementia[MeSH Terms])) OR (Dement[Title/Abstract])) OR (Senile[Title/Abstract])) AND (((((((((((((health coord[Title/Abstract]) OR (care coord[Title/Abstract])) OR (care collab[Title/Abstract])) OR (health collab[Title/Abstract])) OR (health manage[Title/Abstract])) OR (care manage[Title/Abstract])) OR (Case Manage[Title/Abstract])) OR (Case Management[MeSH Major Topic])) OR (Case Management[MeSH Terms]) OR (integrated care [Title/Abstract])) OR (integrated health [Title/Abstract])) OR (comprehensive care [Title/Abstract])) OR (seamless care [Title/Abstract])) OR (transmural care[Title/Abstract].

Conflicts of Interest

The authors declare that they have no conflicts of interest.

Acknowledgments

This scoping review was financed by Forte – the Swedish Research Council for health, working life and welfare (grant # STY-2021/0005 Dnr: 2021/01786).

References

A. Bångsbo, A. Dunér, S. Dahlin-Ivanoff, and E. Lidén, “Barriers for inter-organisational collaboration: what matters for an integrated care programme?” International Journal of Integrated Care, vol. 22, no. 2, pp. 1–22, 2022.
View at: Publisher Site | Google Scholar
A. M. Lyngsø, N. S. Godtfredsen, and A. Frølich, “Interorganisational integration: healthcare professionals' perspectives on barriers and facilitators within the Danish healthcare system,” International Journal of Integrated Care, vol. 16, no. 1, pp. 1–10, 2016.
View at: Google Scholar
J. Y. Lau, E. L. Wong, R. Y. Chung et al., “Collaborate across silos: perceived barriers to integration of care for the elderly from the perspectives of service providers,” The International Journal of Health Planning and Management, vol. 33, no. 3, pp. e768–e780, 2018.
View at: Publisher Site | Google Scholar
World Health Organization, in Health Topics/integrated People-Centered Care [internet], World Health Organization, Geneva, Switzerland, 2023.
World Health Organization, Continuity and Coordination of Care: A Practice Brief to Support Implementation of the WHO Framework on Integrated People-Centred Health Services, World Health Organization, Geneva, Switzerland, 2018.
World Health Organization, Integrated Care for Older People (ICOPE) Implementation Framework: Guidance for Systems and Services, World Health Organization, Geneva, Switzerland, 2019.
J. Marcusson, K. Blennow, and I. Skoog, Alzheimers Sjukdom Och Andra Kognitiva Sjukdomar, Liber, Stockholm, Sweden, 2011.
World Health Organization, World Report on Ageing and Health, World Health Organization, Geneva, Switzerland, 2015.
K. Christensen, G. Doblhammer, R. Rau, and J. W. Vaupel, “Ageing populations: the challenges ahead,” The Lancet, vol. 374, no. 9696, pp. 1196–1208, 2009.
View at: Publisher Site | Google Scholar
A. Backhouse, D. A. Richards, R. McCabe, R. Watkins, and C. Dickens, “Stakeholders perspectives on the key components of community-based interventions coordinating care in dementia: a qualitative systematic review,” BMC Health Services Research, vol. 17, no. 1, p. 767, 2017.
View at: Publisher Site | Google Scholar
H. Brodaty, C. Thomson, C. Thompson, and M. Fine, “Why caregivers of people with dementia and memory loss don't use services,” International Journal of Geriatric Psychiatry, vol. 20, no. 6, pp. 537–546, 2005.
View at: Publisher Site | Google Scholar
J. Røsvik, M. Michelet, K. Engedal et al., “Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers: a scoping review,” Aging and Mental Health, vol. 24, no. 2, pp. 200–211, 2020.
View at: Publisher Site | Google Scholar
I. D. Saragih, S. Tonapa, C. J. Lin, and B. O. Lee, “Effects of case management intervention for people with dementia and their carers: a systematic review and meta-analysis of experimental studies,” International Journal of Nursing Studies, vol. 121, Article ID 104012, 2021.
View at: Publisher Site | Google Scholar
V. Khanassov and I. Vedel, “Family physician-case manager collaboration and needs of patients with dementia and their caregivers: a systematic mixed studies review,” The Annals of Family Medicine, vol. 14, no. 2, pp. 166–177, 2016.
View at: Publisher Site | Google Scholar
C. Schiller, M. Grünzig, S. Heinrich, G. Meyer, and A. Bieber, “Case management for people with dementia living at home and their informal caregivers: a scoping review,” Health and Social Care in the Community, vol. 30, no. 4, pp. 1233–1253, 2022.
View at: Publisher Site | Google Scholar
P. J. Verkade, B. van Meijel, C. Brink, H. van Os-Medendorp, B. Koekkoek, and A. L. Francke, “Delphi research exploring essential components and preconditions for case management in people with dementia,” BMC Geriatrics, vol. 10, no. 1, p. 54, 2010.
View at: Publisher Site | Google Scholar
S. Reilly, C. Miranda-Castillo, R. Malouf et al., “Case management approaches to home support for people with dementia,” Cochrane Database of Systematic Reviews, vol. 1, no. 1, Article ID CD008345, 2015.
View at: Publisher Site | Google Scholar
S. H. Belle, L. Burgio, R. Burns et al., “Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial,” Annals of Internal Medicine, vol. 145, no. 10, pp. 727–738, 2006.
View at: Publisher Site | Google Scholar
V. Khanassov, I. Vedel, and P. Pluye, “Barriers to implementation of case management for patients with dementia: a systematic mixed studies review,” The Annals of Family Medicine, vol. 12, no. 5, pp. 456–465, 2014.
View at: Publisher Site | Google Scholar
H. Tam-Tham, M. Cepoiu-Martin, P. E. Ronksley, C. J. Maxwell, and B. R. Hemmelgarn, “Dementia case management and risk of long-term care placement: a systematic review and meta-analysis,” International Journal of Geriatric Psychiatry, vol. 28, no. 9, pp. 889–902, 2013.
View at: Publisher Site | Google Scholar
M. D. J. Peters, C. Godfrey, P. McInerney, Z. Munn, A. C. Tricco, and H. Khalil, “Scoping reviews (2020 version),” in JBI Manual for Evidence Synthesis, E. Aromataris and Z. Munn, Eds., Joanna Briggs Institute, Adelaide, Australia, 2020.
View at: Google Scholar
A. C. Tricco, E. Lillie, W. Zarin et al., “PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation,” Annals of Internal Medicine, vol. 169, no. 7, pp. 467–473, 2018.
View at: Publisher Site | Google Scholar
A. C. Tricco, E. Lillie, W. Zarin et al., “A scoping review on the conduct and reporting of scoping reviews,” BMC Medical Research Methodology, vol. 16, no. 1, p. 15, 2016.
View at: Publisher Site | Google Scholar
J. Österholm, A.-C. Nedlund, and A. Larsson Ranada, “Collaboration and coordination of health and care services for older people with dementia by multidisciplinary health and care providers: a scoping review protocol,” BMJ Open, vol. 12, no. 12, Article ID e066578, 2022.
View at: Publisher Site | Google Scholar
M. J. Page, J. E. McKenzie, P. M. Bossuyt et al., “The PRISMA 2020 statement: an updated guideline for reporting systematic reviews,” BMJ, vol. 372, no. 71, p. n71, 2021.
View at: Publisher Site | Google Scholar
G. Tomlin and B. Borgetto, “Research pyramid: a new evidence-based practice model for occupational therapy,” American Journal of Occupational Therapy, vol. 65, no. 2, pp. 189–196, 2011.
View at: Publisher Site | Google Scholar
J. Ritchie, J. Lewis, C. M. Nicholls, and R. Ormston, Qualitative Research Practice: A Guide for Social Science Students and Researchers, Sage Publications Ltd, London, UK, 2013.
R. Jasper, H. Chester, J. Hughes et al., “Practitioners preferences of care coordination for older people: a discrete choice experiment,” Journal of Gerontological Social Work, vol. 61, no. 2, pp. 151–170, 2018.
View at: Publisher Site | Google Scholar
N. H. L. Ha, I. Chan, P. Yap et al., “Mixed-method evaluation of caritas: a hospital-to-community model of integrated care for dementia,” BMJ Open, vol. 10, no. 10, Article ID e039017, 2020.
View at: Publisher Site | Google Scholar
G. A. Heckman, L. Crutchlow, V. Boscart et al., “Quality assurance as a foundational element for an integrated system of dementia care,” International Journal of Health Care Quality Assurance, vol. 32, no. 6, pp. 978–990, 2019.
View at: Publisher Site | Google Scholar
C. Bamford, M. Poole, K. Brittain et al., “Understanding the challenges to implementing case management for people with dementia in primary care in England: a qualitative study using normalization process theory,” BMC Health Services Research, vol. 14, no. 1, p. 549, 2014.
View at: Publisher Site | Google Scholar
M. Chase, C. E. M. Lloyd, B. J. Peters, E. Chase, and K. Lee, “Joining the dots: day to day challenges for practitioners in delivering integrated dementia care,” Health and Social Care in the Community, vol. 29, no. 4, pp. 1061–1071, 2021.
View at: Publisher Site | Google Scholar
L. Lee, L. M. Hillier, and S. Gregg, “Partnerships for improving dementia care in primary care: extending access to primary care-based memory clinics in Ontario, Canada,” Health and Social Care in the Community, vol. 27, no. 6, pp. 1574–1585, 2019.
View at: Publisher Site | Google Scholar
S. Heinrich, F. Laporte Uribe, M. Roes et al., “Knowledge management in dementia care networks: a qualitative analysis of successful information and support strategies for people with dementia living at home and their family caregivers,” Public Health, vol. 131, pp. 40–48, 2016.
View at: Publisher Site | Google Scholar
Y. Hirakawa, C. Chiang, and A. Aoyama, “A qualitative study on barriers to achieving high-quality, community-based integrated dementia care,” Journal of Rural Medicine, vol. 12, no. 1, pp. 28–32, 2017.
View at: Publisher Site | Google Scholar
A. Stephan, R. Möhler, A. Renom-Guiteras, and G. Meyer, “Successful collaboration in dementia care from the perspectives of healthcare professionals and informal carers in Germany: results from a focus group study,” BMC Health Services Research, vol. 15, no. 1, p. 208, 2015.
View at: Publisher Site | Google Scholar
L. D. van Mierlo, F. J. Meiland, H. P. J. van Hout, and R.-M. Dröes, “Towards personalized integrated dementia care: a qualitative study into the implementation of different models of case management,” BMC Geriatrics, vol. 14, no. 1, p. 84, 2014.
View at: Publisher Site | Google Scholar
L. Phillipson, L. Smith, and C. Duncan, “Perspectives and practices associated with consumer-directed care in Australia: synergies and tensions in supporting planning and delivery of home care for older people with dementia,” Health and Social Care in the Community, vol. 30, no. 5, pp. e2772–e2781, 2022.
View at: Publisher Site | Google Scholar
A. Leggett, C. Connell, L. Dubin et al., “Dementia care across a tertiary care health system: what exists now and what needs to change,” Journal of the American Medical Directors Association, vol. 20, no. 10, pp. 1307–1312.e1, 2019.
View at: Publisher Site | Google Scholar
H. Piercy, S. Fowler-Davis, M. Dunham, and C. Cooper, “Evaluation of an integrated service delivering post diagnostic care and support for people living with dementia and their families,” Health and Social Care in the Community, vol. 26, no. 6, pp. 819–828, 2018.
View at: Publisher Site | Google Scholar
N. H. L. Ha, P. Yap Lin Kiat, S. O. Nicholas, I. Chan, and S. L. Wee, “Evaluating the outcomes of a hospital-to-community model of integrated care for dementia,” Dementia and Geriatric Cognitive Disorders, vol. 49, no. 6, pp. 598–603, 2020.
View at: Publisher Site | Google Scholar
J. M. Peeters, A. M. Pot, J. deLange, P. M. Spreeuwenberg, and A. Francke, “Does the organisational model of dementia case management make a difference in satisfaction with case management and care giver burden? an evaluation study,” BMC Geriatrics, vol. 16, no. 1, p. 65, 2016.
View at: Publisher Site | Google Scholar
G. Z. Steiner, C. Ee, S. Dubois et al., “We need a one-stop-shop: co-creating the model of care for a multidisciplinary memory clinic with community members, GPs, aged care workers, service providers, and policy-makers,” BMC Geriatrics, vol. 20, no. 1, p. 49, 2020.
View at: Publisher Site | Google Scholar
A. Stephan, A. Bieber, L. Hopper et al., “Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries,” BMC Geriatrics, vol. 18, no. 1, pp. 131–216, 2018.
View at: Publisher Site | Google Scholar
S. Mavandadi, E. M. Wright, M. M. Graydon, D. W. Oslin, and L. O. Wray, “A randomized pilot trial of a telephone-based collaborative care management program for caregivers of individuals with dementia,” Psychological Services, vol. 14, no. 1, pp. 102–111, 2017.
View at: Publisher Site | Google Scholar
S. Mavandadi, L. O. Wray, S. DiFilippo, J. Streim, and D. Oslin, “Evaluation of a telephone-delivered, community-based collaborative care management program for caregivers of older adults with dementia,” American Journal of Geriatric Psychiatry, vol. 25, no. 9, pp. 1019–1028, 2017.
View at: Publisher Site | Google Scholar
S. E. Fæø, O. Tranvag, R. Samdal, B. S. Husebo, and F. K. Bruvik, “The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study,” BMC Health Services Research, vol. 20, no. 1, p. 1045, 2020.
View at: Publisher Site | Google Scholar
K. Gridley and G. Parker, “Specialist nursing case management support for carers of people with dementia: a qualitative study comparing experiences of carers with and without Admiral Nursing,” Health and Social Care in the Community, vol. 30, no. 3, pp. e668–e676, 2022.
View at: Publisher Site | Google Scholar
J. A. Tanner, B. S. Black, D. Johnston et al., “A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at home on caregiver outcomes,” American Journal of Geriatric Psychiatry, vol. 23, no. 4, pp. 391–402, 2015.
View at: Publisher Site | Google Scholar
J. M. Vroomen, J. E. Bosmans Je, P. M. van de Ven et al., “Community-dwelling patients with dementia and their informal caregivers with and without case management: 2-year outcomes of a pragmatic trial,” Journal of the American Medical Directors Association, vol. 16, no. 9, pp. 1–8, 2015.
View at: Google Scholar
M. F. D'Souza, J. Davagnino, S. N. Hastings, R. Sloane, B. Kamholz, and J. Twersky, “Preliminary data from the caring for older adults and caregivers at home (COACH) program: a care coordination program for home-based dementia care and caregiver support in a veterans affairs medical center,” Journal of the American Geriatrics Society, vol. 63, no. 6, pp. 1203–1208, 2015.
View at: Publisher Site | Google Scholar
A. F. Brown, S. D. Vassar, K. I. Connor, and B. G. Vickrey, “Collaborative care management reduces disparities in dementia care quality for caregivers with less education,” Journal of the American Geriatrics Society, vol. 61, no. 2, pp. 243–251, 2013.
View at: Publisher Site | Google Scholar
D. M. Bass, K. S. Judge, A. Lynn Snow et al., “Caregiver outcomes of partners in dementia care: effect of a care coordination program for veterans with dementia and their family members and friends,” Journal of the American Geriatrics Society, vol. 61, no. 8, pp. 1377–1386, 2013.
View at: Publisher Site | Google Scholar
L. Darlak, D. M. Bass, K. S. Judge et al., “Engagement of veterans with dementia in partners in dementia care: an evidence-based care coordination program,” Journal of Applied Gerontology, vol. 36, no. 5, pp. 570–591, 2017.
View at: Publisher Site | Google Scholar
E. Renehan, D. Goeman, and S. Koch, “Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community,” BMC Health Services Research, vol. 17, no. 1, p. 501, 2017.
View at: Publisher Site | Google Scholar
Q. M. Samus, D. Johnston, B. S. Black et al., “A multidimensional home based care coordination intervention for elders with memory disorders: the maximizing independence at home (mind) pilot randomized trial,” American Journal of Geriatric Psychiatry, vol. 22, no. 4, pp. 398–414, 2014.
View at: Publisher Site | Google Scholar
J. R. Thyrian, J. Hertel, D. Wucherer et al., “Effectiveness and safety of dementia care management in primary care: a randomized clinical trial,” JAMA Psychiatry, vol. 74, no. 10, pp. 996–1004, 2017.
View at: Publisher Site | Google Scholar
H. Amjad, S. K. Wong, D. L. Roth et al., “Health services utilization in older adults with dementia receiving care coordination: the MIND at home trial,” Health Services Research, vol. 53, no. 1, pp. 556–579, 2018.
View at: Publisher Site | Google Scholar
A. Waugh, A. Austin, J. Manthorpe et al., “Designing a complex intervention for dementia case management in primary care,” BMC Family Practice, vol. 14, no. 1, p. 101, 2013.
View at: Publisher Site | Google Scholar
J. Ashbourne, V. Boscart, S. Meyer, C. E. Tong, and P. Stolee, “Health care transitions for persons living with dementia and their caregivers,” BMC Geriatrics, vol. 21, no. 1, p. 285, 2021.
View at: Publisher Site | Google Scholar
K. Kazawa, A. Kodama, K. Sugawara et al., “Person-centered dementia care during covid-19: a qualitative case study of impact on and collaborations between caregivers,” BMC Geriatrics, vol. 22, no. 1, p. 107, 2022.
View at: Publisher Site | Google Scholar
P. Nadash, N. M. Silverstein, and F. Porell, “The dementia care coordination program: engaging health systems in caregiver supports,” Dementia, vol. 18, no. 4, pp. 1273–1285, 2019.
View at: Publisher Site | Google Scholar
S. Lertkratoke, K. Amnatsatsue, P. Kerdmongkol, and S. Nanthamongkolchai, “Effectiveness of Thai integrated care program for older adults with dementia in the community: a quasi-experimental study,” Pacific Rim International Journal of Nursing Research, vol. 25, no. 4, pp. 510–524, 2021.
View at: Google Scholar
L. D. Van Mierlo, A. Bootsma-Van der Wiel, F. J. Meiland, H. P. Van Hout, M. L. Stek, and R. M. Dröes, “Tailored mental health care after nursing home admission: improving transfers of people with dementia with behavioral problems: an explorative study,” Aging and Mental Health, vol. 19, no. 10, pp. 902–911, 2015.
View at: Publisher Site | Google Scholar
B. Tilburgs, M. Vernooij-Dassen, R. Koopmans, M. Weidema, M. Perry, and Y. Engels, “The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study,” BMC Geriatrics, vol. 18, no. 1, p. 184, 2018.
View at: Publisher Site | Google Scholar
L. Lee, L. M. Hillier, K. Lumley-Leger et al., “Key lessons learned in the strategic implementation of the primary care collaborative memory clinic model: a tale of two regions,” World Health and Population, vol. 18, no. 1, pp. 68–81, 2019.
View at: Publisher Site | Google Scholar
J. Marcusson, K. Blennow, and I. Skoog, Alzheimers Sjukdom Och Andra Kognitiva Sjukdomar, Liber, Stockholm, Sweden, 2011.
D. Robertshaw and A. Cross, “Experiences of integrated care for dementia from family and carer perspectives: a framework analysis of massive open online course discussion board posts,” Dementia, vol. 18, no. 4, pp. 1492–1506, 2019.
View at: Publisher Site | Google Scholar
D. L. Oostra, A. Harmsen, M. S. Nieuwboer, M. G. M. O. Rikkert, and M. Perry, “Care integration in primary dementia care networks: a longitudinal mixed-methods study,” International Journal of Integrated Care, vol. 21, no. 4, p. 29, 2021.
View at: Publisher Site | Google Scholar
T. D. Rosa, K. L. Possin, A. Bernstein et al., “Variations in costs of a collaborative care model for dementia,” Journal of the American Geriatrics Society, vol. 67, no. 12, pp. 2628–2633, 2019.
View at: Publisher Site | Google Scholar
J. Nordh and A.-C. Nedlund, “To coordinate information in practice: dilemmas and strategies in care management for citizens with dementia,” Journal of Social Service Research, vol. 43, no. 3, pp. 319–335, 2017.
View at: Publisher Site | Google Scholar
A. Scerri, A. Innes, and C. Scerri, “Dementia care in acute hospitals: a qualitative study on nurse managers' perceived challenges and solutions,” Journal of Nursing Management, vol. 28, no. 2, pp. 399–406, 2020.
View at: Publisher Site | Google Scholar
K. J. Moore, B. Candy, S. Davis et al., “Implementing the compassion intervention, a model for integrated care for people with advanced dementia towards the end of life in nursing homes: a naturalistic feasibility study,” BMJ Open, vol. 7, no. 6, Article ID e015515, 2017.
View at: Publisher Site | Google Scholar
H. Verbeek, A. Worden, M. Wilberforce et al., “Community mental health teams for older people in England: variations in ways of working,” International Journal of Geriatric Psychiatry, vol. 33, no. 3, pp. 475–481, 2018.
View at: Publisher Site | Google Scholar
T. Luckett, L. Chenoweth, J. Phillips et al., “A facilitated approach to family case conferencing for people with advanced dementia living in nursing homes: perceptions of palliative care planning coordinators and other health professionals in the IDEAL study,” International Psychogeriatrics, vol. 29, no. 10, pp. 1713–1722, 2017.
View at: Publisher Site | Google Scholar
World Health Organization, Integrated Care for Older People (ICOPE) Implementation Framework: Guidance for Systems and Services, World Health Organization, Geneva, Switzerland, 2019.
S. Iliffe, L. Robinson, C. Bamford et al., “Introducing case management for people with dementia in primary care: a mixed-methods study,” British Journal of General Practice, vol. 64, no. 628, pp. e735–e741, 2014.
View at: Publisher Site | Google Scholar
B. Chen, X. Cheng, B. Streetman-Loy, M. F. Hudson, D. Jindal, and N. Hair, “Effect of care coordination on patients with Alzheimer disease and their caregivers,” American Journal of Managed Care, vol. 26, no. 11, pp. e369–e375, 2020.
View at: Publisher Site | Google Scholar
M. Abendstern, R. Jasper, J. Hughes, N. Loynes, C. Sutcliffe, and D. Challis, “Care coordination for older people in England: does context shape approach?” Journal of Social Work, vol. 19, no. 4, pp. 427–449, 2019.
View at: Publisher Site | Google Scholar
L. Reinhoudt-den Boer, J. van Wijngaarden, and R. Huijsman, “Coproducing care and support delivery in healthcare triads: Dutch case managers for people with dementia at home using strategies to handle conflict in the healthcare triad,” Health and Social Care in the Community, vol. 30, no. 5, pp. e1560–e1569, 2022.
View at: Publisher Site | Google Scholar
L. Lee, L. M. Hillier, J. Locklin, K. Lumley-Leger, and F. Molnar, “Specialist and family physician collaboration: insights from primary care-based memory clinics,” Health and Social Care in the Community, vol. 27, no. 4, pp. e522–e533, 2019.
View at: Publisher Site | Google Scholar
K. L. Possin, J. J. Merrilees, S. Dulaney et al., “Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the care ecosystem randomized clinical trial,” JAMA Internal Medicine, vol. 179, no. 12, pp. 1658–1667, 2019.
View at: Publisher Site | Google Scholar
J. E. Galvin, M. I. Tolea, N. George, and C. Wingbermuehle, “Public-private partnerships improve health outcomes in individuals with early stage Alzheimer's disease,” Clinical Interventions in Aging, vol. 9, no. 9, pp. 621–630, 2014.
View at: Publisher Site | Google Scholar
E. Risco, E. Cabrera, M. Farré, C. Alvira, S. Miguel, and A. Zabalegui, “Perspectives about health care crovision in cementia care in Spain: a qualitative study using focus-group methodology,” American Journal of Alzheimer's Disease and Other Dementias, vol. 31, no. 3, pp. 223–230, 2016.
View at: Publisher Site | Google Scholar
A. Willink, K. Davis, D. M. Johnston et al., “Cost-effective care coordination for people with dementia at home,” Innovation in Aging, vol. 4, no. 2, p. igz051, 2020.
View at: Publisher Site | Google Scholar
L. Lee, L. M. Hillier, G. Heckman et al., “Primary care-based memory clinics: expanding capacity for dementia care,” Canadian Journal on Aging/La Revue canadienne du vieillissement, vol. 33, no. 3, pp. 307–319, 2014.
View at: Publisher Site | Google Scholar
S. Iliffe, J. Wilcock, M. Synek, R. Carboch, D. Hradcová, and I. Holmerová, “Case management for people with dementia and its translations: a discussion paper,” Dementia, vol. 18, no. 3, pp. 951–969, 2019.
View at: Publisher Site | Google Scholar
S. O. U. Äldreomsorgen, Under Pandemin, Regeringskansliet, Stockholm, Sweden, 2020.
A.-C. Nedlund and A. Taghizadeh Larsson, “To protect and to support: how citizenship and self-determination are legally constructed and managed in practice for people living with dementia in Sweden,” Dementia, vol. 15, no. 3, pp. 343–357, 2016.
View at: Publisher Site | Google Scholar
S. Iliffe, J. Manthorpe, and V. Drennan, “Dementia care in the community: challenges for primary health and social care,” in Dementia, D. Arness, J. T. O´Brien, and A. Burns, Eds., CRC Press, Boca Raton, FL, USA, 5th edition, 2017.
View at: Google Scholar
Ö. Jh and L.-C. Hydén, “Citizenship as practice: handling communication problems in encounters between persons with dementia and social workers,” Dementia, vol. 15, no. 6, pp. 1457–1473, 2016.
View at: Publisher Site | Google Scholar
A. Dunér, A. Bångsbo, and T. M. Olsson, “Talkingmats as a decision aid to promote involvement in choice and decision-making around home care services for older people with mild to moderate dementia: study protocol for a randomized controlled trial,” BMC Geriatrics, vol. 23, no. 1, p. 244, 2023.
View at: Publisher Site | Google Scholar
R. Bartlett and D. O'Connor, “From personhood to citizenship: broadening the lens for dementia practice and research,” Journal of Aging Studies, vol. 21, no. 2, pp. 107–118, 2007.
View at: Publisher Site | Google Scholar
A.-C. Nedlund, R. Bartlett, and C. Clarke, “Everyday citizenship: a way to broaden our view of life with dementia,” in Everyday Citizenship and People with Dementia, A.-C. N. R. Bartlett and C. Clarke, Eds., pp. 1–12, Dunedin Academic Press, Dunedin, New Zealand, 2019.
View at: Google Scholar
A.-C. Nedlund and R. Bartlett, “Citizenship-in-and-as-practice: a framework for improving life with dementia,” in Living With Dementia: Relations, Responses and agency in Everyday Life, L.-C. Hydén and E. Antelius, Eds., pp. 49–67, Palgrave Macmillan, Basingstoke, UK, 2017.
View at: Google Scholar
D. O’Connor and A.-C. Nedlund, “Editorial introduction: special issue on citizenship and dementia,” Dementia, vol. 15, no. 3, pp. 285–288, 2016.
View at: Publisher Site | Google Scholar
A. Taghizadeh Larsson and J. Österholm, “How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings,” International Psychogeriatrics, vol. 26, no. 11, pp. 1849–1862, 2014.
View at: Publisher Site | Google Scholar
J. Österholm and A. Larsson Ranada, “Characteristics of research with older people (over 65 years) in occupational therapy journals, 2013–2017,” Scandinavian Journal of Occupational Therapy, vol. 27, no. 4, pp. 240–247, 2020.
View at: Publisher Site | Google Scholar

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Copyright © 2023 Johannes Österholm et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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