Organising regional collaborations in Young-Onset Dementia care: how current practice reflects national integrated care policy recommendations

Organising regional collaborations in Young-Onset Dementia care: how current practice reflects national integrated care policy recommendations | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Organising regional collaborations in Young-Onset Dementia care: how current practice reflects national integrated care policy recommendations Sophie van Westendorp, Cynthia Hofman, Merwin Mortier, Britt Appelhof, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9242306/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 5 You are reading this latest preprint version Abstract Background Fragmented care hinders access to age-appropriate services for individuals with young-onset dementia (YOD). YOD is characterised by a low-volume population with complex care needs, and its care is associated with specific challenges in both the delivery and organisation of services. Integrated care is an approach that can address these challenges, and health care policies in the Netherlands include recommendations on integrated care delivery. For YOD specifically, it is recommended to strengthen regional collaboration to support integrated care delivery. This study examines how regional collaborations for YOD are organised and governed, and how these relate to national integrated care policy recommendations. Methods A targeted web search complemented with a short questionnaire and a survey (‘YOD self-scan’) were combined to document potential YOD-specific collaborations and identify YOD-specific networks. Quantitative and qualitative data on characteristics, enablers and challenges were analysed using descriptive statistics and deductive thematic analysis. Results Potential YOD-specific collaborations were common; 16 regional YOD-specific networks were identified. These differed in aims, governance, coordination, cross-sectoral composition, and formalisation. Enablers of effective collaboration were shared goals, commitment, and formalisation. Challenges included time constraints, limited organisational capacity, and fragmented funding structures. Conclusions Current practice appears only partially aligned with the integrated care policy for YOD as promising YOD-specific networks exist with different levels of maturity. Organisation depends on the interplay of process-related, contextual, and structural conditions requiring coherent, cross-sector approaches to overcome specific challenges inherent to rare, complex conditions. This is the first study to map YOD-specific collaborations in integrated dementia care networks, clarifying how integrated care policy for a small, complex population is reflected in practice. Young-onset dementia (YOD) Integrated dementia care (IDC) networks Health care governance Health policy Health care delivery Figures Figure 1 Background Fragmentation of care for individuals with young-onset dementia (YOD) hinders access to age-appropriate post-diagnostic services ( 1 , 2 ). YOD is defined as dementia symptom onset before the age of 65 years ( 3 ). This population is characterised by a relatively low prevalence (3.9 million individuals worldwide, including 14,000–17,000 in the Netherlands ( 4 )) and by complex care needs due to challenges inherent in this life phase, such as employment, parenting, and social engagement ( 5 , 6 ). Previous research has suggested that receiving tailored services can improve well-being ( 2 , 7 – 9 ), increase satisfaction with care ( 2 , 10 , 11 ), reduce caregiver burden ( 12 ), and delay institutionalisation ( 9 , 13 ). A personalised, family-centred approach is recommended ( 14 , 15 ). This aligns with the World Health Organisation’s (WHO’s) approach to integrated care, which emphasises coordinated, multidisciplinary support tailored to individuals’ needs ( 16 ). Integrated care has been widely recognised as a strategy to address fragmentation and improve health care delivery and access ( 17 – 19 ). Numerous approaches to organising integrated dementia care (IDC) have been described across different settings ( 20 – 25 ), e.g. case management programmes ( 22 ), regional infrastructures ( 21 , 24 ), and international comparisons ( 23 ). Within this context, integrated care adopts a health system perspective that includes the delivery of integrated care across settings and levels of care ( 26 ). In the Netherlands, this perspective has been operationalised through the development of regional IDC networks, promoted by the establishment of the Dementia Network Netherlands (DNN) in 2017 ( 27 ). DNN aims to improve access, quality, and affordability of dementia care through cross-sector collaborations among organisations within a region. These cross-sector collaborations are typically led by a network coordinator, an independent person who is responsible for connecting relevant stakeholders, promoting shared responsibility for IDC, and enhancing coordination across care levels ( 21 ). In parallel, specific attention to YOD has increased since the foundation of the Young-Onset Dementia Knowledge Centre in 2013. Through a hub-and-spoke model, this centre (the hub) coordinates knowledge exchange and service development specialised for YOD, with affiliated health care organisations delivering YOD-specialised care and support, Alzheimer centres, and the Dutch Alzheimer’s Society forming the spokes ( 28 ). YOD has also been prioritised in the national dementia strategy and has its own scientific agenda that promotes research ( 29 ). In addition, a care standard has been developed, including recommendations to ensure the delivery of integrated care, such as a recommendation to establish collaborations for YOD at the regional level ( 30 ). Organisations are responsible for adapting national health policy recommendations to their local context, leading to variations in governance, partnerships, and effectiveness. Previous research has revealed substantial variation in the nature of cross-sector collaborations within Dutch regional IDC networks, with some being well established and others relying more on ad hoc partnerships ( 21 ). Additionally, international studies have emphasised a variety of integrated care models in response to national policy frameworks ( 22 , 25 , 31 – 34 ). These studies highlight the potential of having policy instruments for delivering integrated care but also highlight its challenges. A recent study reported that current national policies often constrain the cross-sector collaborations required for effective delivery, particularly when they fail to accommodate local initiatives ( 34 ). This highlights a gap in knowledge on how organisations can effectively translate policy into practice, especially for underserved populations like individuals with YOD. Gaining insight into how such collaborations are organised in practice is essential to inform health system design for rare, complex conditions. Therefore, this study examines how regional collaborations for YOD are organised and governed, and how this reflects the national integrated care policy recommendations. First, potential YOD-specific collaborations were documented by exploring the connection between YOD-specialised health care organisations and regional IDC networks. Second, YOD-specific networks were identified by assessing the potential collaborations that are used in delivering such care. Third, the characteristics of these YOD-specific networks at the regional level were described. Fourth, enablers and challenges were identified by revealing elements perceived as supporting or hindering collaboration in these networks. Insights from this study contribute to the evidence base on integrated care for small, complex populations and offer practical lessons for both policymakers and practitioners. Methods Study design This multimethod study, conducted in the Netherlands as part of the YOD-INCLUDED project, combines two steps to address these aims (Table 1 ). Table 1 Overview of the method used per aim to answer the research question Used methods Aims Research questions Step 1: Targeted web search complemented with a short questionnaire 1. To document potential YOD-specific collaborations Are YOD-specialised health care organisations and regional IDC networks connected? Step 2: Survey (YOD self-scan) 2. To identify YOD-specific networks Do YOD-specialised health care organisations use these potential YOD-specific collaborations for YOD care? 3. To describe characteristics of regional YOD-specific networks What are the characteristics of established regional YOD-specific networks? 4. To determine enablers and challenges What elements supported or hindered the regional YOD-specific collaborations? Targeted web search In the first step, the connections between YOD-specialised health care organisations and regional IDC networks were examined. In 2023, 66 regional IDC networks were affiliated with DNN, and 39 YOD-specialised health care organisations were affiliated with the Young-Onset Dementia Knowledge Centre. Supplementary Figure S1 illustrates both types of affiliated members on a map. A targeted web search was conducted by systematically reviewing the publicly available websites of regional IDC networks to identify their listed member organisations and map network composition. This provided an initial overview of regional IDC networks in which YOD-specialised health care organisations were involved. These findings were complemented by a short questionnaire completed by network coordinators of the IDC networks for validation. Coordinators were approached through email, phone or the DNN internal communication platform by a DNN office manager. Coordinators were chosen for their comprehensive knowledge of both network functioning and stakeholder involvement within their region. YOD self-scan The second step involved developing the YOD self-scan to collect detailed quantitative and qualitative data. The self-scan addressed three domains: ( 1 ) the delivery of specialised post-diagnostic services, ( 2 ) the management of these services, and ( 3 ) YOD-specific collaborations (Supplementary Material S2). This article reports data from the third domain; the other domains have been described elsewhere ( 35 ). Participants Organisations were considered for inclusion based on of their affiliation with the Young-Onset Dementia Knowledge Centre. No exclusion criteria were applied to capture the full range of YOD-specific collaborations. To increase response rates, organisations received detailed information through existing meetings, newsletters and emails on the relevance of the study, implications of participation, and potential impact on future YOD-specific care. The YOD self-scan was distributed to all 39 members. Participating organisations were encouraged to involve relevant team members since the required information often spanned multiple areas of expertise. Two online question-and-answer sessions were organised to support data collection. Collected tips and insights were distributed via email to all organisations. Development of the YOD self-scan The YOD self-scan was developed by the research team in collaboration with the Knowledge Centre and was made available on paper and online. Questions were formulated based on input from end users and the board of the Knowledge Centre, recent literature, and the research protocol. To ensure the relevance, clarity, and feasibility of the questions, a pilot was conducted with two YOD-specialised health care organisations. Feedback was gathered on paper and/or by telephone and discussed within the research team until consensus was reached, resulting in more suitable question–answer options. The two pilot organisations were included in the final study to ensure the completeness of data collection. Data collection To enable more targeted questions about YOD-specific collaborations, participants were first indicated the levels at which they were involved (interregional, regional, local, or other levels). Interregional collaboration was defined as occurring across regions. The ‘other’ option was included to capture forms that participants considered not to fit the predefined categories. For each selected level, a maximum of 31 questions were presented, including additional sub questions depending on the maturity of the YOD-specific network. Participants were not required to complete all questions at once. This flexibility allowed respondents to reflect, gather information when necessary, and involve the relevant members of the network. After data collection, an online session was organised with end users, such as professionals of the YOD-specialised health care organisations and members of the board of the Knowledge Centre, to discuss results and validate content. The data collected focused on research questions two, three and four (Table 1 ). Additionally, YOD-specific health care organisations that did not use their connections with IDC networks were asked for clarification. Characteristics of regional YOD-specific networks included the aim of collaborating, governance models, and details on the availability of a network coordinator. Governance models were classified according to the framework of Provan and Kenis ( 36 ). Their framework describes three models: ( 1 ) participatory governance, referring to governance by network members themselves; ( 2 ) lead organisation governance, referring to a central form in which activities and decisions are made by a single participating member; and ( 3 ) network administrative organisation, referring to a central form in which a network coordinator plays a key role in coordinating and sustaining the network. Cross-sector collaborations for delivering integrated YOD care were assessed by identifying existing partnerships with organisations from the following common sectors: health care, referring to organisations focusing on the diagnosis, treatment, and prevention of an illness; social care, referring to organisations focusing on supporting individuals who need help with daily living; policy and research, referring to organisations that develop strategies, regulations, and evidence-based solutions regarding care; and other, referring to remaining entities. Operational definitions were derived from the framework on integrated care from the WHO ( 16 ). The presence and extent of collaboration agreements between these partnerships were collected. Data were gathered on communication mechanisms, financial and resource support, including the funding for the network coordinator and the network itself. Finally, the perceived quality and accessibility of cross-sector partnerships were rated a five-point Likert scale ranging from 1 (’very poor’) to 5 (‘very good’). Statistical analysis Qualitative data were analysed using deductive thematic analysis, applying the framework analysis model of Ritchie & Spencer ( 37 ). The analytical framework was based on a review identifying determinants of effectiveness in purpose-oriented health care networks, organised into three overarching themes: process, context and structure (Table 2 ) ( 38 ). Table 2 Overview of the main codes and their definitions according to Peeters et al. ( 38 ) Main code Definition Process Determinants of network effectiveness; processes constitute the largest group of determinants and relate to the collaborative processes occurring within the boundaries of the network itself. Examples include trust, commitment, a shared understanding of the problem and goal, communication mechanisms, and leadership ( 39 ). Context Environmental and historic dimensions that occur outside the boundaries of the network and include determinants like the (institutional) environment ( 40 ), preexisting relationships (e.g., ( 41 )), and system stability ( 39 ). Structure Boundaries and formal design of the network; includes determinants like the governance structure (42) and the composition of the network members ( 43 ). This framework was selected because it offers a comprehensive structure for the identification of enablers and challenges in regional YOD-specific collaborations, which can be conceptualised as a purpose-oriented network. Two authors (SW and PG) independently coded the data, and discrepancies were resolved by consultation with a third author (CH). Codes were translated from Dutch into English by one author (SW) and verified by a second author (CH). Quantitative data were summarised using descriptive statistics. Continuous variables were described as the mean and standard deviation (SD) or median and interquartile range (IQR), depending on distribution. Categorical variables were summarised as proportions and percentages. Analyses were conducted using IBM SPSS Statistics, version 29 (IBM Corp., Armonk, N.Y., USA) for quantitative data and Microsoft Excel, version 2308 for qualitative data. This combined approach facilitated a comprehensive mapping of both the structure and content of networks for YOD. The number of responses (n) varied among variables because certain questions were not applicable to every participant and due to missing data. Missing data originated from nonresponding organisations, from responding organisations that lacked the necessary information, or from organisations that chose not to answer certain questions. Missing values were excluded from the calculation of percentages and can be found in Supplementary Material S3. Given the extensive scope of the YOD self-scan, missing data is assumed to be missing at random Ethical considerations This study did not involve any medical interventions, human participants or health-related data but focused on YOD-specific networks. Therefore, approval by an ethics committee was deemed unnecessary according to national regulations ( 44 ). Consent was obtained from representatives of the participating organisations. Results Potential YOD-specific collaborations Among the 66 regional IDC networks, information on memberships was available for 61. Cross-checking with the 39 YOD-specialised health care organisations revealed that 41 networks included at least one YOD-specialised organisation, 24 did not, and information was missing for one. Among the 39 organisations, 18 were affiliated with one network, 18 with multiple networks, and three with none. Complementary data obtained through the short questionnaire found one additional network that included at least one YOD-specialised organisation (42 of 66; 63.6%), and two additional organisations being members of one or more networks (37 of 39; 94.9%). Seven network coordinators did not respond to the short questionnaire; in six of these cases, the targeted web search also revealed no formal affiliation with a YOD-specialised organisation. YOD-specific networks Of the 39 YOD-specialised health care organisations invited, 33 responded: 28 completed the YOD self-scan in full, two partially, and three declined, indicating that they did not offer services to people with YOD or that these services were not tailored to individuals with YOD. Among the 28 full responses, most organisations reported being part of a YOD-specific network at the regional level (n = 16), with some also being active at local (n = 2) or interregional (n = 5) levels. The majority of regional collaborations used the DNN infrastructure, while three relied on self-established structures. Ten organisations reported not using their connection to regional IDC networks for YOD care, but six reported reaching out to other organisations when supporting an individual with YOD. One organisation considered a YOD-specific network unnecessary, arguing that having access to a general IDC network and the Knowledge Centre was sufficient. Furthermore, three organisations reported being in the process of establishing a YOD-specific network, and six expressed the need but had not yet initiated any concrete steps for reasons not captured in the self-scan. Their motivations ranged from creating an organised network that health care providers could join to strengthening knowledge exchange among stakeholders. Characteristics of regional YOD-specific networks Information was available on 16 regional YOD-specific networks. Aims of collaboration Aims varied across YOD-specific networks. Most (11 of 16) pursued two main objectives: exchanging knowledge on YOD care and jointly improving service delivery for this group. Two networks focused on only one of these objectives, while three networks reported additional aims, e.g. further formalising their existing collaboration structures for YOD (n = 2) or facilitating peer support (n = 1). Governance models and coordination The majority of the YOD-specific networks followed a centrally coordinated governance model (11 of 16, 68.8%), typically led by an organisation, most often an internal partner within the network (10 of 11). Coordination of these networks was often performed by a formal network coordinator (n = 9) rather than informally by a professional combining this role with other responsibilities (n = 2). In contrast, four YOD-specific networks operated under participatory governance, characterised by shared decision-making among partners. These networks were equally distributed between formal and informal coordinators. One network lacked data. Overall, formal network coordinators had a larger contractual allocation (median: 12 hours per week; range: 2–36) than informal coordinators did (median: 2; range: 0–2). They were also more likely to perceive their allocated time as sufficient (7 of 8, missing in 3, versus 1 of 4, missing in 3). Formal network coordinators in participant governance models tended to have more hours allocated (median: 22; range: 8–36) than those in centrally coordinated ones did (median: 12; range: 2–24), whereas the reverse was observed for informal coordinators. Cross-sector collaborations Most YOD-specific networks involved partners from all three sectors (n = 10), although one included only collaborations within the health care sector (YOD-specific network D in Fig. 1). Figure 1 illustrates cross-sector collaborations (rows) per regional YOD-specific network (columns). Approximately one-third of the fully cross-sectoral collaborations (3 of 10) reported being fully satisfied with their current composition (YOD-specific networks E, F, and I). The remaining networks (n = 12) recognised the need to expand across sectors (red and orange cells in Fig. 1), particularly towards the social care sector, by including municipalities (n = 5) and carer support organisations (n = 5). In seven networks, actions had already been initiated to collaborate with partners who were currently missed. In the health care sector, nursing and home care organisations (n = 14) and general practitioner care groups (n = 10) were most commonly involved (green and orange cells in Fig. 1). In the social sector, municipalities and social welfare organisations were equally included, whereas in the policy and research sector, a regional department of the Dutch Alzheimer’s Society (n = 11) was frequently engaged. Collaboration types were represented as: F = formal, I = informal, AH = ad hoc, and M = missing data. Most collaborations were at least partly formalised (F) via agreements (43 of 98). Nonetheless, ad hoc collaborations (AH) without any established collaboration agreement were also common (30 of 98). Of these ad hoc collaborations, six organisations (20%) were already part of a network but were simultaneously considered desirable additions. This pattern did not occur among collaborations with formal or informal agreements. Perceived quality and accessibility of collaborations The perceived quality and accessibility of collaborations varied across sectors and partners. Overall, respondents rated their collaborations positively, with no ratings of ‘very poor’ and several ratings of ‘very good’ (Supplementary Material S4). Collaborations with municipalities and certain medical actors (e.g., mental health organisations and health insurers) were perceived as less effective and harder to engage in. In contrast, collaborations with volunteer organisations and research centres received the highest ratings, although often based on fewer ratings. Communication among partners took place mainly through digital channels, e.g. email, MS Teams, websites, and professional referral systems. Four YOD-specific networks also held in-person meetings. Funding and resources Structural funding was reported in eight YOD-specific networks, of which five assessed the amount as sufficient (missing data in 3). Among these five, four had multiple funding sources, e.g. a health care organisation, a health insurer, a long-term care office, or a municipality. None of the three self-established networks received structural funding, whereas two of ten using the DNN infrastructure lacked such funding (missing data in 3). Enablers and challenges Process Most enablers and challenges reported were related to collaborative processes. Problem definitions, shared goals, and collaboration mission were frequently mentioned. Collaborations that explicitly prioritised the needs and preferences of individuals with YOD were perceived as more effective. Additionally, a strong sense of commitment, positivity, and sincerity within collaborations was often mentioned as enabling. In contrast, the absence of a shared vision regarding care provision was reported to hinder progress. Respondents described challenges in aligning regional practices and noted a disconnect between policy frameworks and practical needs. One respondent illustrated this: Reaching regional agreements on matters such as whether a YOD-specialised case manager is always necessary proves to be challenging […] Although recommendations for regional care programmes have been developed, the reality of practice is often complex and resistant to change (Representative of organisation 83, YOD self-scan 2023). Time constraints were another widely reported challenge. Respondents described the combination of heavy workloads and specific challenges inherent to YOD as limiting the priority given to collaboration efforts. Because YOD is relatively rare, participants perceived it as receiving less attention than more common conditions did. The following quote reflects this commonly reported issue: Due to heavy workload, care and support for YOD does not receive priority, partly because the disease is relatively rare. (Representative of organisation 125, YOD self-scan 2023) Enablers within the process domain included efficient and direct communication among partners, a clear understanding of each partner’s area of expertise, the (early) involvement of YOD-specialised case managers, and mutual openness and commitment to collaboration. In addition, respondents stressed the importance of formalising existing partnerships and clarifying the roles of involved organisations to strengthen sustainability of collaboration. The presence of these elements enabled collaboration, whereas their absence was perceived as a challenge. This included remarks on regional coordination, agreements with long-term care providers, and the embedding of the YOD-specific network within existing infrastructures. The complexity of organising YOD care itself also sometimes complicates collaboration. This broader concern was captured in the following quote from one respondent: There remains considerable ambiguity regarding the concept of ‘low-volume–high-complexity (LVHC)’* outside long-term care organisations. This contributes to misunderstandings about the rationale for care concentration and raises concerns about increased geographical distance from one’s home and family. (Representative of organisation 77, YOD self-scan 2023) * LVHC care refers to specialised health care for rare, complex conditions that require tailored, multidisciplinary expertise ( 45 ). Although YOD is not officially recognised as LVHC, the Dutch Ministry of Health has acknowledged it as a distinct target group that should be considered within an LVHC framework context. Context The most frequently reported challenge concerned limited organisational capacity, including shortages in staff and funding, as well as insufficient time and support for professionals to engage in collaborative efforts. Respondents described how operationalisation often stalled because of these constraints. One respondent explained: Despite the availability of well-developed plans, implementation is hindered by shortages in human resources and funding, especially in nursing homes. (Representative of organisation 125, YOD self-scan 2023) Existing relationships and attitudes towards collaboration were perceived as enabling. Respondents described how short communication lines and easy access to one another supported effective collaboration, as illustrated by a respondent who stated: Collaboration with case managers, general practitioners, hospitals, and day care treatment services is going very well. Communication lines are short, and we find each other easily. (Representative of organisation 55, YOD self-scan 2023) In addition, preexisting collaborations established through joint projects in which practical issues were effectively addressed contributed to a sense of responsiveness within the network. Structure The most frequently reported challenge was related to the limited flexibility of current financing mechanisms for integrated YOD care. Respondents indicated that individuals with YOD would benefit from funding arrangements that enable service delivery across organisational boundaries. However, funding is currently organised according to legislative care categories rather than individuals’ care pathways, which reinforces siloed working and hampers coordinated collaboration. Two respondents described practical challenges in securing funding for this group. One example was: Suitable financing remains a challenge. For example, it is not financially sustainable when one resident attends day care at another care organisation. (Representative of organisation 110, YOD self-scan 2023) In contrast, respondents described structural enablers related to network composition and cross-sector collaboration. YOD-specific networks varied in their composition and in the sectors represented. The relevance of establishing cross-sector collaborations as well as different levels of maturity was recognised. One respondent described how their network is evolving by gradually involving more partners: We are proud to connect an increasing number of partners within our dementia care network for YOD, such as YOD-specialised case managers, general practitioners, geriatricians, day care services, and residential facilities. (Representative of organisation 125, YOD self-scan 2023) Discussion This study provides insight into how regional collaborations for YOD are organised and governed, and how this reflects national policy recommendations, addressing a recognised gap in dementia care ( 33 , 45 ). The examination of regional YOD-specific networks addressed the four aims (Table 1 ) and highlighted a persistent policy-practice gap. Current practice appears only partially aligned with the integrated care policy for YOD. Numerous potential YOD-specific collaborations were documented, as most YOD-specialised organisations were connected with regional IDC networks. Yet, only 16 regional YOD-specific networks were identified. Characteristics such as maturity, composition, and degree of formalisation differed considerably across networks. Organisations reported a range of process-related, contextual, and structural enablers of and challenges to effective collaboration, which influenced both the development and sustainability of integrated YOD-specific care networks. Process-related enablers and challenges The identified enablers included a shared, person-centred vision and the presence of a formal network coordinator. Collaborations were most successful when partners explicitly prioritised the needs of individuals with YOD. This finding aligns with the core principles of integrated care ( 16 ) and supports other findings that integrated care should be driven by the needs and values of the individual rather than by institutional structures alone ( 46 ). Most YOD-specific networks were coordinated by a formal network coordinator, even when operating under lead organisation or participant governance models. According to Provan and Kenis ( 36 ), network coordinators are typically absent or fulfil a small task in these models. Our findings diverge from their theoretical framework and suggest that the presence of a network coordinator may be a contributing enabler for realising effective YOD-specific collaborations, regardless of the governance model. Structural funding for the network and funding for the network coordinator were assessed as two distinct elements. Although some networks had both, these were not consistently linked and therefore cannot explain the relatively high number of network coordinators among the different governance models. Our results emphasise the importance of a network coordinator. Respondents stressed that connecting factors such as having mutual openness and commitment enabled YOD-specific collaborations. They also highlighted the need for regional agreements that clarify how care is organised and the roles of involved partners. Establishing connections and coordinating agreements from an independent perspective are considered the responsibility of a formal network coordinator ( 21 ). These responsibilities align with the needs and enablers mentioned by respondents. The importance of a network coordinator in IDC networks is also highlighted by an empirical study from Kroeze et al. ( 21 ). Their study focused on a network administrative organisation governance model in which network coordinators are typically present. Nevertheless, others have reported that the coordination of the network is more important than the specific integrated care model adopted ( 32 ). Neither study addressed YOD-specific networks. Contextual enablers and challenges Organisational capacity and relational dynamics were cited as the contextual elements influencing effective YOD-specific collaborations. Our identified challenges are consistent with literature in the broader context of the delivery of long-term care, reporting funding constraints ( 1 , 23 , 31 , 33 , 47 ) and limited human resources ( 1 , 31 , 47 ). One study provided a best practices framework for organising health care delivery systems for persons with ongoing care needs and their families on the basis of key challenges. The authors reported that funding and human resource issues, along with failures among organisations to collaborate as a cohesive service delivery system, constitute challenges for people in receiving good-quality and timely care ( 31 ). The identified challenges appeared particularly pronounced for YOD-specific networks, but are likely to affect other networks that organise integrated care for rare, complex conditions. Such networks may face similar challenges related to scale, fragmentation and resource constraints. Due to the low prevalence, most organisations within a regional IDC network rarely encounter people with YOD ( 1 ). Respondents noted that this contributed to lower prioritisation within dementia care agendas. This lack of priority may cause organisations not to perceive YOD care as their core responsibility and less inclined to allocate time, resources and funding to YOD-specific initiatives. Strong interpersonal relationships and short communication lines were consistently described as enablers of effective collaboration, regardless of the communication platform used. Collaborations from earlier joint projects that successfully addressed practical challenges were more likely to be sustained and evolve over time. Structural enablers and challenges Structural enablers and challenges were particularly evident in relation to funding, network composition, and formalisation. Funding mechanisms at the system level remain fragmented and insufficient. In our study, only 8 of 16 YOD-specific collaborations received structural funding, all embedded in the DNN infrastructure. The need for more flexible financing structures was expressed to deliver integrated YOD care as a network, particularly when services span multiple providers. Similar funding gaps have hindered case management programs within Dutch IDC networks ( 23 ). While a previous attempt to secure structural funding has been undertaken, it was unsuccessful ( 24 ). This finding reinforces the notion that policy aims alone are insufficient without structural follow-through. Addressing these challenges requires overarching agreements and collective investments that span organisational boundaries rather than fragmented budgets tied to individual institutions. Although the LVHC framework was not the primary focus of this study, lessons can be drawn from their structure, which demonstrates that cross-institutional funding is feasible when supported by recognised frameworks, clear role definitions, and coordinated regional governance of resource allocation ( 48 ). Most YOD-specific networks recognised cross-sector collaborations involving partners from all three sectors as essential, yet many identified gaps, particularly in engaging social care actors such as municipalities and carer support organisations. This aligns with earlier findings that, although increased awareness of YOD has helped develop care and support, fragmentation remains due to limited integration among sectors and inconsistent involvement of social care actors ( 1 ). Nevertheless, several of the YOD-specific networks had already initiated steps to involve missing partners, indicating a growing awareness of the need for broader integration consistent with international policy guidelines ( 26 ). Finally, respondents frequently emphasised the need to further formalise existing collaborations. Although many collaborations were partly formalised, ad hoc arrangements remained common. Interestingly, all collaborations with organisations that were already part of the network but still considered as desirable additions were based on ad hoc arrangements. This suggests that formalisation plays a key role in effective collaborations. Moving beyond informal, goodwill-based collaborations towards institutionalised agreements, roles, and funding structures is important to sustain efficient integrated YOD care. In summary, promising examples of YOD-specific networks exist, but their development remains uneven. The interplay of processual, contextual, and structural challenges mirrors the barriers identified by Alderwick et al. ( 34 ), who reported that cross-sector collaboration often falters when shared goals, trust, and governance clarity are insufficiently supported by system-wide resources. Our findings extend this understanding by showing that these same dynamics apply even more strongly to small and complex populations like individuals with YOD, where limited prevalence amplifies the effects of resource scarcity and unclear responsibilities. Strengths and limitations A key strength of this study lies in its multimethod approach, combining the targeted web search with an extensive survey of YOD-specialised organisations. This supported us to examine how the policy recommendation is currently translated into practice and to identify enablers and challenges in multiple domains. The findings provide a foundation for reflection and further development of YOD-specific networks in the Netherlands, and offer insights for other countries and those delivering integrated care to comparable small, complex populations. The co-development of the YOD self-scan with stakeholders enhanced its contextual relevance and credibility, aligning with participatory approaches in integrated care research ( 49 , 50 ). Data validity was strengthened by cross-checking findings from the targeted web search with network coordinators, and member checking by presenting results from the YOD self-scan to YOD-specialised organisations for feedback. In addition, the high response provided a representative overview. Nevertheless, some limitations must be considered. Despite the high overall response, nonresponse from numerous network coordinators and YOD-specialised health care organisations may have introduced bias and limited completeness. Reasons for nonresponse remain unclear but may reflect differences in organisational capacity or engagement with YOD-specific collaboration. In addition, the length and multidisciplinary nature of the YOD self-scan, may have increased the threshold for participation. Missing data on certain variables could have influenced the findings. Furthermore, qualitative insights were derived solely from open-ended questions, providing breadth but limiting opportunities for deeper exploration. Recommendations for practice and policy Building on the opportunities and challenges identified in our study, several recommendations can strengthen integrated care for individuals with YOD at the regional level. First, YOD-specific collaborations should be established and formalised within existing IDC networks, such as those supported by DNN. These collaborations must span sectors and include stakeholders frequently identified as missing in our study to ensure comprehensive and person-centred service delivery ( 19 , 34 , 47 ). Clear formal agreements regarding each partner’s role, responsibilities, and contributions are needed to ensure adequate structural human and financial resources. This includes clarity on collaborations among partners delivering mainstream care and those providing YOD-specialised services. Insights can be drawn from LVHC care that show flexible financing schemes across organisational boundaries are needed to ensure the continuity of services ( 31 , 48 ). Second, IDC networks should create conditions that enable organisations to connect through informal trust-building and to allocate time, staff, and resources specifically for YOD-related initiatives, and support them in structuring their involvement accordingly. Such transparency and alignment can help overcome challenges and foster shared responsibility, despite the low prevalence. Third, strengthening integrated YOD-care requires a coherent approach in which relational trust, adequate resources, clear collaboration agreements, and system-level funding arrangements are aligned. Such coherence is necessary to address the interrelated process-, contextual-, and structural challenges identified in this study. Finally, dedicated time and resources for network coordinators is essential to initiate, facilitate, and coordinate YOD-specific networks. Their involvement is crucial for connecting relevant partners across care levels and ensuring the sustainability and effectiveness of IDC ( 21 , 32 ). To support network coordinators in learning across regions and accelerate the dissemination of best practices on local initiatives for YOD-specific collaborations, current mechanisms for knowledge sharing by the DNN should be expanded specifically for this population ( 33 ). Recommendations for future research Future research could include comparative studies across different health care systems, financing arrangements, relevant legislation frameworks, and population densities to expand knowledge on effective regional collaborations. Such studies could help to identify which approaches are most effective in strengthening integrated care for YOD and other rare, complex conditions ( 16 , 18 ). In addition, interviews or focus groups are needed to capture more nuanced insights into the roles, responsibilities and contributions of partners in YOD-specific networks. Incorporating perspectives of individuals with YOD and their carers by exploring their needs and the expectations of the different partners involved would further enrich this understanding. These insights could provide a framework for clear formal agreements, thereby supporting network coordinators, practitioners, and policy-makers. Addressing these questions would be valuable for improving integrated care delivery through YOD-specific networks and for assessing the effectiveness and impact of different models of collaboration ( 20 , 23 , 35 ). Conclusion By studying a context characterised by long-standing regional network infrastructures and a national policy emphasis on integrated care, this study provides insight into how policy recommendations for a small, complex population are reflected in current service organisation and governance. Our findings show that, although regional IDC networks offer a solid foundation, YOD-specific collaborations are not yet consistently embedded and are developing unevenly across regions. This variation reflects the interplay of process-, context- and structural conditions, shaping the integrated care delivery at the regional level. By demonstrating how established mechanisms of integrated care manifest differently, and often more acutely, in networks serving a low volume population, this study extends the integrated care literature beyond more prevalent conditions. The findings highlight transferable conditions for strengthening policy-practice alignment, including coherence between policy intent, network governance, coordination capacity, and financing arrangement. These insights are relevant for improving integrated care for individuals with YOD, but also for other rare and complex populations facing similar challenges in delivering and governing services across organisational boundaries. Abbreviations AH Ad hoc DNN Dementia Network Netherlands F Formal I Informal IDC Integrated dementia care IQR interquartile range LVHC Low-Volume-High-Complexity M missing data SD Standard deviation WHO World Health Organisation YOD Young-Onset Dementia Declarations Ethics approval and consent to participate Not applicable, the study was not approved by an ethics committee because approval was deemed unnecessary according to national regulations (44). The study did not involve any medical interventions, such as the administrations of medication, medical treatments, of diagnostic tests, and therefore did not fall under ethical review requirements. Furthermore, the study did not involve human participants or health-related data, but instead focused on the service provision, governance and collaborations of health care organisations. Consent for publication Not applicable. Data availability The datasets used and/or analyses during the current study are available from the corresponding author in reasonable request. Competing Interests The authors declared no potential conflicts of interests with respect to the research, authorship, and/or publication of this article. Funding This publication is part of the project YOD-INCLUDED (project no. 10510032120002) of the Dutch Dementia Research Programme, which is financed by ZonMw. ZonMw is a Dutch organisation for health research and development, focussing on promoting and funding health research and health care innovation. The views presented here are those of the authors. Authors’ contributions The initial study design was conceived as part of a grant application by CB and RK. SW and MM designed the study. BA and CH assisted in the study design. SW and PG conducted the data collection. MM assisted in the data collection. SW and PG performed the statistical analysis. CH assisted with the statistical analysis. SW drafted the initial manuscript and revised subsequent versions. CH contributed to the development of the manuscript. All authors reviewed versions and approved the final manuscript. Acknowledgements The authors would like to acknowledge the members of the YOD-INCLUDED consortium (Supplementary Material S5). References Goodman C, Littlechild B, Mayrhofer AM, Russell S, Shora S, Tibbs MA. Living with young onset dementia: Reflections on recent developments, current discourse, and implications for policy and practice. Aging Soc. 2021;41(11):2437–45. Mayrhofer A, Mathie E, McKeown J, Bunn F, Goodman C. Age-appropriate services for people diagnosed with Young Onset Dementia (YOD): A systematic review. Aging Ment Health. 2018;22(8):927–35. Van de Veen D, Bakker C, Peetoom K, Pijnenburg Y, Papma J, De Vugt M, et al. Provisional consensus on the nomenclature and operational definition of dementia at a young age, a Delphi study. Int J Geriatr Psychiatry. 2022;37(3):1–11. Hendriks S, Peetoom K, Bakker C, Van der Flier WM, Papma JM, Koopmans R, et al. Global prevalence of young-onset dementia: A systematic review and meta-analysis. JAMA Neurol. 2021;78(9):1080–90. Millenaar JK, Bakker C, Koopmans RT, Verhey FR, Kurz A, De Vugt ME. The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: A systematic review. Int J Geriatr Psychiatry. 2016;31(12):1261–76. Millenaar JK, De Vugt ME, Bakker C, Van Vliet D, Pijnenburg YA, Koopmans RT, et al. The impact of young onset dementia on informal caregivers compared with late onset dementia: Results from the NeedYD study. Am J Geriatric Psychiatry. 2016;24(6):467–74. Thorsen K, Dourado MCN, Johannessen A. Developing dementia: The existential experience of the quality of life with young-onset dementia – A longitudinal case study. Dementia. 2020;19(3):878–93. Bakker C, De Vugt ME, Vernooij-Dassen M, Van Vliet D, Verhey FR, Koopmans RT. Needs in early onset dementia: A qualitative case from the NeedYD study. Am J Alzheimer's Disease Other Dementias®. 2010;25(8):634–40. Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: A review of the literature. J Am Association Nurse Practitioners. 2008;20(8):423–8. Williams T. From pillar to post - A study of younger people with dementia. Psychiatr Bull. 2001;25:384–7. Stamou V, La Fontaine J, Gage H, Jones B, Williams P, O'Malley M, et al. Services for people with young onset dementia: The 'Angela' project national UK survey of service use and satisfaction. Int J Geriatr Psychiatry. 2021;36(3):411–22. Van Vliet D, De Vugt ME, Bakker C, Koopmans RT, Verhey FR. Impact of early onset dementia on caregivers: A review. Int J Geriatr Psychiatry. 2010;25(11):1091–100. Bakker C, De Vugt ME, Van Vliet D, Verhey FR, Pijnenburg YA, Vernooij-Dassen MJ, et al. Predictors of the time to institutionalization in young- versus late-onset dementia: Results from the Needs in Young Onset Dementia (NeedYD) study. J Am Med Dir Assoc. 2013;14(4):248–53. Millenaar JK, Van Vliet D, Bakker C, Vernooij-Dassen MJ, Koopmans RT, Verhey FR, et al. The experiences and needs of children living with a parent with young onset dementia: Results from the NeedYD study. Int Psychogeriatr. 2014;26(12):2001–10. Kuruppu DK, Matthews BR. Young-onset dementia. Seminstd Neurol. 2013;33(4):365–85. World Health Organization. Integrated people-centred health services. Geneva, Switzerland: World Health Organization; 2016. Enthoven AC. Integrated delivery systems: The cure for fragmentation. Am J Managed Care. 2009;15(10 Suppl):S284–90. Valentijn PP, Schepman SM, Opheij W, Bruijnzeels MA. Understanding integrated care: A comprehensive conceptual framework based on the integrative functions of primary care. Int J Integr Care. 2013;13:e010. Zonneveld N, Raab J, Minkman MMN. Towards a values framework for integrated health services: An international Delphi study. BMC Health Serv Res. 2020;20(1):224. Oostra DL, Harmsen A, Nieuwboer MS, Rikkert M, Perry M. Care integration in primary dementia care networks: A longitudinal mixed-methods study. Int J Integr Care. 2021;21(4):29. Kroeze E, Huijsman R. One for all, all for one: A mixed methods case study into the role organisational and personal interests play on cooperation in Dutch integrated dementia care networks. Int J Integr Care. 2022;22(3):10. Kümpers S, Mur I, Hardy B, Van Raak A, Maarse H. Integrating dementia care in England and The Netherlands: Four comparative local case studies. Health Place. 2006;12(4):404–20. Minkman MM, Ligthart SA, Huijsman R. Integrated dementia care in The Netherlands: A multiple case study of case management programmes. Health Soc Care Commun. 2009;17(5):485–94. Nies H, Stekelenburg D, Minkman M, Huijsman R. A decade of lessons learned from integration strategies in the Netherlands. Int J Integr Care. 2021;21(4):15. Kogata T. Strengthening the national care system for young onset dementia. Int J Public Health. 2022;67:1605099. World Health Organization. Roadmap: Strengthening people-centred health systems in the WHO European Region: A framework for action towards coordinated/integrated health services delivery (CIHSD). Copenhagen, Denmark: WHO Regional Office for Europe; 2013. Dementia Network Netherlands (DNN). Policy vision on regional dementia care networks. 2024. Bakker C, Verboom M, Koopmans R. Reimagining postdiagnostic care and support in young-onset dementia. J Am Med Dir Assoc. 2022;23(2):261–5. Young-Onset Dementia Knowledge Center (UKON). Scientific agenda for young-onset dementia. Amersfoort, Netherlands: Kenniscentrum Dementie op Jonge Leeftijd, UKON, Radboudumc; 2020. Dementia, The Board of the Knowledge Centre for Young-Onset. The regional care program 2020 [Available from: https://zorgprogrammadementieopjongeleeftijd.nl/het-regionale-zorgprogramma/ Hollander MJ, Prince MJ. Organizing healthcare delivery systems for persons with ongoing care needs and their families: A best practices framework. Healthc Q. 2008;11(1):44–54. 2. Béland F, Hollander MJ. Integrated models of care delivery for the frail elderly: International perspectives. Gac Sanit. 2011;25:138–46. Uribe FL, Wolf-Ostermann K, Thyrian JR, Holle B. Regional and local dementia care networks. In: Martin CR, Preedy VR, editors. Diagnosis and management in dementia. Cambridge, MA: Academic; 2020. pp. 777–92. Alderwick H, Hutchings A, Mays N. Cross-sector collaboration to reduce health inequalities: a qualitative study of local collaboration between health care, social services, and other sectors under health system reforms in England. BMC Public Health. 2024;24(1):2613. van Westendorp S, Hofman C, Mortier M, Appelhof B, Gerring P, Koopmans R, et al. Exploring the Delivery and Management of Specialised Post-Diagnostic Care and Support in Young-Onset Dementia: A Cross-Sectional Study. Health Serv Insights. 2025;18:11786329251388775. Provan KG, Kenis P. Modes of network governance: Structure, management, and effectiveness. J Public Adm Res Theor. 2007;18(2):229–52. Ritchie J, Lewis J. Qualitative research practice: A guide for social science students and researchers. London, UK: Sage; 2003. Peeters R, Westra D, Van Raak AJA, Ruwaard D. So happy together: A review of the literature on the determinants of effectiveness of purpose-oriented networks in health care. Med Care Res Rev. 2023;80(3):266–82. Ansell C, Gash A. Collaborative Governance in Theory and Practice. J Public Adm Res Theor. 2007;18(4):543–71. Parent MM, Harvey J. Towards a Management Model for Sport and Physical Activity Community-based Partnerships. Eur Sport Manage Q. 2009;9(1):23–45. Turrini A, Cristofoli D, Frosini F, Nasi G. Networking literature about determinants of network effectiveness. Public Adm. 2010;88(2):528–50. Bryson JM, Crosby BC, Stone MM. Designing and Implementing Cross-Sector Collaborations: Needed and Challenging. Public Adm Rev. 2015;75(5):647–63. Planko J, Chappin MMH, Cramer JM, Hekkert MP. Managing strategic system-building networks in emerging business fields: A case study of the Dutch smart grid sector. Ind Mark Manage. 2017;67:37–51. Subjects CCRIH. Your research: Is it subject to the WMO or not? [Available from: https://english.ccmo.nl/investigators/legal-framework-for-medical-scientific-research/your-research-is-it-subject-to-the-wmo-or-not Koopmans R, Leerink B, Festen DAM. Dutch long-term care in transition: A guide for other countries. J Am Med Dir Assoc. 2022;23(2):204–6. Minkman MMN, Zonneveld N, Hulsebos K, Van der Spoel M, Ettema R. The renewed development model for integrated care: A systematic review and model update. BMC Health Serv Res. 2025;25(1):434. Draper B, Low LF, Brodaty H. Integrated care for adults with dementia and other cognitive disorders. Int Rev Psychiatry. 2018;30(6):272–91. Nederlandse Zorgautoriteit. Advies bekostiging Kennis en zorg voor laag volume hoog complexe doelgroepen in de Wet langdurige zorg. Utrecht, Netherlands: Nederlandse Zorgautoriteit; 2020. Heinrich S, Sommerfeld U, Michalowsky B, Hoffmann W, Thyrian JR, Wolf-Ostermann K, et al. How to initiate dementia care networks? Processes, barriers, and facilitators during the development process of a practice-oriented website toolkit out of research results. Int Q Community Health Educ. 2017;37(3–4):151–60. Maurer M, Mangrum R, Hilliard-Boone T, Amolegbe A, Carman KL, Forsythe L, et al. Understanding the influence and impact of stakeholder engagement in patient-centered outcomes research: A qualitative study. J Gen Intern Med. 2022;37(1):6–13. Additional Declarations No competing interests reported. Supplementary Files S2.YODselfscan.pdf S1S35.docx Cite Share Download PDF Status: Under Review Version 1 posted Reviewers invited by journal 06 Apr, 2026 Editor assigned by journal 06 Apr, 2026 Editor invited by journal 03 Apr, 2026 Submission checks completed at journal 31 Mar, 2026 First submitted to journal 31 Mar, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9242306","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":619181798,"identity":"d54b43b8-25fd-40e3-881b-390ffcc3c5b4","order_by":0,"name":"Sophie van Westendorp","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABP0lEQVRIie2RPUvDQBiA3xJIl4tzSjD9CwkHrcWa33JHIC6pDl0EBQuFuqS6VsT/UJcUweEgkCzB+aAOEaGboLiki3o1IqTaugreA8fdvdzD+3EAEsnfRAVSujOxngAqY7HrH5HqOoUUSmVUUpTvCiwrClqj1E+GcZYdAD27COz7ed7e20iGs4edG2dzUg3sqeY70CwrVnq7a5EU6OguxRgRr1tLkyb2Zy6+DlK8rYUutPplRfcbOh0ABt4JDSARHXNPNXymiIPfMLSQgRWVCxstlFfAdd6ZzHPyVihb7HilAnyh9MC0RBZAhBUKsGilInrxdBLrps33XwzkufQ8jat2wBLRS9xtXYYuWi5MTKyWH7WRyT36nLcdepoM1Cxnh2Ji/Sv+GDqmlfTKlSH4mv9PP/X54JfIkiKRSCT/nnesvX2b+vzSJQAAAABJRU5ErkJggg==","orcid":"","institution":"Radboud University Medical Centre","correspondingAuthor":true,"prefix":"","firstName":"Sophie","middleName":"van","lastName":"Westendorp","suffix":""},{"id":619181800,"identity":"f7c812a6-28a1-42bf-afda-fc1794ad0d92","order_by":1,"name":"Cynthia Hofman","email":"","orcid":"","institution":"Vilans, National Centre of Expertise for Long-term Care","correspondingAuthor":false,"prefix":"","firstName":"Cynthia","middleName":"","lastName":"Hofman","suffix":""},{"id":619181802,"identity":"25295a79-8bc7-47da-8b84-1fc38b0c6535","order_by":2,"name":"Merwin Mortier","email":"","orcid":"","institution":"Radboud University Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Merwin","middleName":"","lastName":"Mortier","suffix":""},{"id":619181804,"identity":"e846b9fd-5eb6-4609-8471-41ef21ba28ae","order_by":3,"name":"Britt Appelhof","email":"","orcid":"","institution":"Radboud University Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Britt","middleName":"","lastName":"Appelhof","suffix":""},{"id":619181807,"identity":"90e013ff-6413-4bf6-9ef2-5673fa161291","order_by":4,"name":"Paula Gerring","email":"","orcid":"","institution":"Vilans, National Centre of Expertise for Long-term Care","correspondingAuthor":false,"prefix":"","firstName":"Paula","middleName":"","lastName":"Gerring","suffix":""},{"id":619181809,"identity":"00aea8bb-2edb-4203-8aae-f9f8aefda12f","order_by":5,"name":"on behalf of the YOD-included consortium","email":"","orcid":"","institution":"Radboud University Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"on","middleName":"behalf of the YOD-included","lastName":"consortium","suffix":""},{"id":619181811,"identity":"c8055204-a747-4329-8f8d-866f0fe7d6f8","order_by":6,"name":"Raymond Koopmans","email":"","orcid":"","institution":"Radboud University Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Raymond","middleName":"","lastName":"Koopmans","suffix":""},{"id":619181812,"identity":"51d8cf9f-5b97-4b3c-b2af-cbd7de43b854","order_by":7,"name":"Christian Bakker","email":"","orcid":"","institution":"Radboud University Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Christian","middleName":"","lastName":"Bakker","suffix":""}],"badges":[],"createdAt":"2026-03-27 08:40:42","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9242306/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9242306/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":106703254,"identity":"b7ba6d7a-29c7-44eb-a408-32b60ce77520","added_by":"auto","created_at":"2026-04-12 07:39:51","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":65879,"visible":true,"origin":"","legend":"\u003cp\u003eCompositions and extent of cross-sector collaborations in regional YOD-specific networks\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-9242306/v1/d12976378edb9bb920b18fc4.png"},{"id":106728234,"identity":"087283c4-6eac-4672-8c68-1053d05683be","added_by":"auto","created_at":"2026-04-12 18:42:13","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":693639,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9242306/v1/9c28d90e-1180-4539-9ff6-dc3cfc748fd4.pdf"},{"id":106703263,"identity":"45839b22-8e11-4e3f-9388-0fae2eac9a98","added_by":"auto","created_at":"2026-04-12 07:39:56","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":3872561,"visible":true,"origin":"","legend":"","description":"","filename":"S2.YODselfscan.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9242306/v1/4fd2fc9a22e9d7e373caf332.pdf"},{"id":106703274,"identity":"53b961f7-ed73-4b92-b8eb-fc527c4ef894","added_by":"auto","created_at":"2026-04-12 07:40:01","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":493834,"visible":true,"origin":"","legend":"","description":"","filename":"S1S35.docx","url":"https://assets-eu.researchsquare.com/files/rs-9242306/v1/0a4a78a5d4f8e9ec7d8bda35.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Organising regional collaborations in Young-Onset Dementia care: how current practice reflects national integrated care policy recommendations","fulltext":[{"header":"Background","content":"\u003cp\u003eFragmentation of care for individuals with young-onset dementia (YOD) hinders access to age-appropriate post-diagnostic services (\u003cspan class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e2\u003c/span\u003e). YOD is defined as dementia symptom onset before the age of 65 years (\u003cspan class=\"CitationRef\"\u003e3\u003c/span\u003e). This population is characterised by a relatively low prevalence (3.9\u0026nbsp;million individuals worldwide, including 14,000–17,000 in the Netherlands (\u003cspan class=\"CitationRef\"\u003e4\u003c/span\u003e)) and by complex care needs due to challenges inherent in this life phase, such as employment, parenting, and social engagement (\u003cspan class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e6\u003c/span\u003e). Previous research has suggested that receiving tailored services can improve well-being (\u003cspan class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e7\u003c/span\u003e–\u003cspan class=\"CitationRef\"\u003e9\u003c/span\u003e), increase satisfaction with care (\u003cspan class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e11\u003c/span\u003e), reduce caregiver burden (\u003cspan class=\"CitationRef\"\u003e12\u003c/span\u003e), and delay institutionalisation (\u003cspan class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e13\u003c/span\u003e). A personalised, family-centred approach is recommended (\u003cspan class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e15\u003c/span\u003e). This aligns with the World Health Organisation’s (WHO’s) approach to integrated care, which emphasises coordinated, multidisciplinary support tailored to individuals’ needs (\u003cspan class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIntegrated care has been widely recognised as a strategy to address fragmentation and improve health care delivery and access (\u003cspan class=\"CitationRef\"\u003e17\u003c/span\u003e–\u003cspan class=\"CitationRef\"\u003e19\u003c/span\u003e). Numerous approaches to organising integrated dementia care (IDC) have been described across different settings (\u003cspan class=\"CitationRef\"\u003e20\u003c/span\u003e–\u003cspan class=\"CitationRef\"\u003e25\u003c/span\u003e), e.g. case management programmes (\u003cspan class=\"CitationRef\"\u003e22\u003c/span\u003e), regional infrastructures (\u003cspan class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e24\u003c/span\u003e), and international comparisons (\u003cspan class=\"CitationRef\"\u003e23\u003c/span\u003e). Within this context, integrated care adopts a health system perspective that includes the delivery of integrated care across settings and levels of care (\u003cspan class=\"CitationRef\"\u003e26\u003c/span\u003e). In the Netherlands, this perspective has been operationalised through the development of regional IDC networks, promoted by the establishment of the Dementia Network Netherlands (DNN) in 2017 (\u003cspan class=\"CitationRef\"\u003e27\u003c/span\u003e). DNN aims to improve access, quality, and affordability of dementia care through cross-sector collaborations among organisations within a region. These cross-sector collaborations are typically led by a network coordinator, an independent person who is responsible for connecting relevant stakeholders, promoting shared responsibility for IDC, and enhancing coordination across care levels (\u003cspan class=\"CitationRef\"\u003e21\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn parallel, specific attention to YOD has increased since the foundation of the Young-Onset Dementia Knowledge Centre in 2013. Through a hub-and-spoke model, this centre (the hub) coordinates knowledge exchange and service development specialised for YOD, with affiliated health care organisations delivering YOD-specialised care and support, Alzheimer centres, and the Dutch Alzheimer’s Society forming the spokes (\u003cspan class=\"CitationRef\"\u003e28\u003c/span\u003e). YOD has also been prioritised in the national dementia strategy and has its own scientific agenda that promotes research (\u003cspan class=\"CitationRef\"\u003e29\u003c/span\u003e). In addition, a care standard has been developed, including recommendations to ensure the delivery of integrated care, such as a recommendation to establish collaborations for YOD at the regional level (\u003cspan class=\"CitationRef\"\u003e30\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eOrganisations are responsible for adapting national health policy recommendations to their local context, leading to variations in governance, partnerships, and effectiveness. Previous research has revealed substantial variation in the nature of cross-sector collaborations within Dutch regional IDC networks, with some being well established and others relying more on ad hoc partnerships (\u003cspan class=\"CitationRef\"\u003e21\u003c/span\u003e). Additionally, international studies have emphasised a variety of integrated care models in response to national policy frameworks (\u003cspan class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e31\u003c/span\u003e–\u003cspan class=\"CitationRef\"\u003e34\u003c/span\u003e). These studies highlight the potential of having policy instruments for delivering integrated care but also highlight its challenges. A recent study reported that current national policies often constrain the cross-sector collaborations required for effective delivery, particularly when they fail to accommodate local initiatives (\u003cspan class=\"CitationRef\"\u003e34\u003c/span\u003e). This highlights a gap in knowledge on how organisations can effectively translate policy into practice, especially for underserved populations like individuals with YOD. Gaining insight into how such collaborations are organised in practice is essential to inform health system design for rare, complex conditions.\u003c/p\u003e \u003cp\u003eTherefore, this study examines how regional collaborations for YOD are organised and governed, and how this reflects the national integrated care policy recommendations. First, potential YOD-specific collaborations were documented by exploring the connection between YOD-specialised health care organisations and regional IDC networks. Second, YOD-specific networks were identified by assessing the potential collaborations that are used in delivering such care. Third, the characteristics of these YOD-specific networks at the regional level were described. Fourth, enablers and challenges were identified by revealing elements perceived as supporting or hindering collaboration in these networks. Insights from this study contribute to the evidence base on integrated care for small, complex populations and offer practical lessons for both policymakers and practitioners.\u003c/p\u003e "},{"header":"Methods","content":"\u003cp\u003eStudy design\u003c/p\u003e\u003cp\u003eThis multimethod study, conducted in the Netherlands as part of the YOD-INCLUDED project, combines two steps to address these aims (Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e \u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\"\u003e\u003c/div\u003e\u003ctable id=\"Tab1\" border=\"1\"\u003e \u003ccaption\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eOverview of the method used per aim to answer the research question\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003c/colgroup\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\"\u003e \u003cp\u003eUsed methods\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\"\u003e \u003cp\u003eAims\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\"\u003e \u003cp\u003eResearch questions\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eStep 1: Targeted web search complemented with a short questionnaire\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e1. To document potential YOD-specific collaborations\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eAre YOD-specialised health care organisations and regional IDC networks connected?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" rowspan=\"3\"\u003e \u003cp\u003eStep 2: Survey (YOD self-scan)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e2. To identify YOD-specific networks\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eDo YOD-specialised health care organisations use these potential YOD-specific collaborations for YOD care?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e3. To describe characteristics of regional YOD-specific networks\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eWhat are the characteristics of established regional YOD-specific networks?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e4. To determine enablers and challenges\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eWhat elements supported or hindered the regional YOD-specific collaborations?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/table\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eTargeted web search\u003c/p\u003e\u003cp\u003eIn the first step, the connections between YOD-specialised health care organisations and regional IDC networks were examined. In 2023, 66 regional IDC networks were affiliated with DNN, and 39 YOD-specialised health care organisations were affiliated with the Young-Onset Dementia Knowledge Centre. Supplementary Figure \u003cspan class=\"InternalRef\"\u003eS1\u003c/span\u003e illustrates both types of affiliated members on a map.\u003c/p\u003e\u003cp\u003eA targeted web search was conducted by systematically reviewing the publicly available websites of regional IDC networks to identify their listed member organisations and map network composition. This provided an initial overview of regional IDC networks in which YOD-specialised health care organisations were involved. These findings were complemented by a short questionnaire completed by network coordinators of the IDC networks for validation. Coordinators were approached through email, phone or the DNN internal communication platform by a DNN office manager. Coordinators were chosen for their comprehensive knowledge of both network functioning and stakeholder involvement within their region.\u003c/p\u003e\u003cp\u003eYOD self-scan\u003c/p\u003e\u003cp\u003eThe second step involved developing the YOD self-scan to collect detailed quantitative and qualitative data. The self-scan addressed three domains: (\u003cspan class=\"CitationRef\"\u003e1\u003c/span\u003e) the delivery of specialised post-diagnostic services, (\u003cspan class=\"CitationRef\"\u003e2\u003c/span\u003e) the management of these services, and (\u003cspan class=\"CitationRef\"\u003e3\u003c/span\u003e) YOD-specific collaborations (Supplementary Material S2). This article reports data from the third domain; the other domains have been described elsewhere (\u003cspan class=\"CitationRef\"\u003e35\u003c/span\u003e).\u003c/p\u003e\n\u003ch3\u003eParticipants\u003c/h3\u003e\n\u003cp\u003eOrganisations were considered for inclusion based on of their affiliation with the Young-Onset Dementia Knowledge Centre. No exclusion criteria were applied to capture the full range of YOD-specific collaborations. To increase response rates, organisations received detailed information through existing meetings, newsletters and emails on the relevance of the study, implications of participation, and potential impact on future YOD-specific care. The YOD self-scan was distributed to all 39 members. Participating organisations were encouraged to involve relevant team members since the required information often spanned multiple areas of expertise. Two online question-and-answer sessions were organised to support data collection. Collected tips and insights were distributed via email to all organisations.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDevelopment of the YOD self-scan\u003c/h2\u003e \u003cp\u003eThe YOD self-scan was developed by the research team in collaboration with the Knowledge Centre and was made available on paper and online. Questions were formulated based on input from end users and the board of the Knowledge Centre, recent literature, and the research protocol. To ensure the relevance, clarity, and feasibility of the questions, a pilot was conducted with two YOD-specialised health care organisations. Feedback was gathered on paper and/or by telephone and discussed within the research team until consensus was reached, resulting in more suitable question\u0026ndash;answer options. The two pilot organisations were included in the final study to ensure the completeness of data collection.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eTo enable more targeted questions about YOD-specific collaborations, participants were first indicated the levels at which they were involved (interregional, regional, local, or other levels). Interregional collaboration was defined as occurring across regions. The \u0026lsquo;other\u0026rsquo; option was included to capture forms that participants considered not to fit the predefined categories. For each selected level, a maximum of 31 questions were presented, including additional sub questions depending on the maturity of the YOD-specific network. Participants were not required to complete all questions at once. This flexibility allowed respondents to reflect, gather information when necessary, and involve the relevant members of the network. After data collection, an online session was organised with end users, such as professionals of the YOD-specialised health care organisations and members of the board of the Knowledge Centre, to discuss results and validate content.\u003c/p\u003e \u003cp\u003eThe data collected focused on research questions two, three and four (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Additionally, YOD-specific health care organisations that did not use their connections with IDC networks were asked for clarification.\u003c/p\u003e \u003cp\u003eCharacteristics of regional YOD-specific networks included the aim of collaborating, governance models, and details on the availability of a network coordinator. Governance models were classified according to the framework of Provan and Kenis (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). Their framework describes three models: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) participatory governance, referring to governance by network members themselves; (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) lead organisation governance, referring to a central form in which activities and decisions are made by a single participating member; and (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) network administrative organisation, referring to a central form in which a network coordinator plays a key role in coordinating and sustaining the network. Cross-sector collaborations for delivering integrated YOD care were assessed by identifying existing partnerships with organisations from the following common sectors: health care, referring to organisations focusing on the diagnosis, treatment, and prevention of an illness; social care, referring to organisations focusing on supporting individuals who need help with daily living; policy and research, referring to organisations that develop strategies, regulations, and evidence-based solutions regarding care; and other, referring to remaining entities. Operational definitions were derived from the framework on integrated care from the WHO (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). The presence and extent of collaboration agreements between these partnerships were collected. Data were gathered on communication mechanisms, financial and resource support, including the funding for the network coordinator and the network itself. Finally, the perceived quality and accessibility of cross-sector partnerships were rated a five-point Likert scale ranging from 1 (\u0026rsquo;very poor\u0026rsquo;) to 5 (\u0026lsquo;very good\u0026rsquo;).\u003c/p\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eStatistical analysis\u003c/h2\u003e \u003cp\u003eQualitative data were analysed using deductive thematic analysis, applying the framework analysis model of Ritchie \u0026amp; Spencer (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e). The analytical framework was based on a review identifying determinants of effectiveness in purpose-oriented health care networks, organised into three overarching themes: process, context and structure (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e) (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eOverview of the main codes and their definitions according to Peeters et al. (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMain code\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDefinition\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProcess\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDeterminants of network effectiveness; processes constitute the largest group of determinants and relate to the collaborative processes occurring within the boundaries of the network itself. Examples include trust, commitment, a shared understanding of the problem and goal, communication mechanisms, and leadership (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eContext\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEnvironmental and historic dimensions that occur outside the boundaries of the network and include determinants like the (institutional) environment (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e), preexisting relationships (e.g., (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e)), and system stability (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStructure\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBoundaries and formal design of the network; includes determinants like the governance structure (42) and the composition of the network members (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThis framework was selected because it offers a comprehensive structure for the identification of enablers and challenges in regional YOD-specific collaborations, which can be conceptualised as a purpose-oriented network. Two authors (SW and PG) independently coded the data, and discrepancies were resolved by consultation with a third author (CH). Codes were translated from Dutch into English by one author (SW) and verified by a second author (CH).\u003c/p\u003e \u003cp\u003eQuantitative data were summarised using descriptive statistics. Continuous variables were described as the mean and standard deviation (SD) or median and interquartile range (IQR), depending on distribution. Categorical variables were summarised as proportions and percentages. Analyses were conducted using IBM SPSS Statistics, version 29 (IBM Corp., Armonk, N.Y., USA) for quantitative data and Microsoft Excel, version 2308 for qualitative data. This combined approach facilitated a comprehensive mapping of both the structure and content of networks for YOD.\u003c/p\u003e \u003cp\u003eThe number of responses (n) varied among variables because certain questions were not applicable to every participant and due to missing data. Missing data originated from nonresponding organisations, from responding organisations that lacked the necessary information, or from organisations that chose not to answer certain questions. Missing values were excluded from the calculation of percentages and can be found in Supplementary Material S3. Given the extensive scope of the YOD self-scan, missing data is assumed to be missing at random\u003c/p\u003e \u003cp\u003eEthical considerations\u003c/p\u003e \u003cp\u003eThis study did not involve any medical interventions, human participants or health-related data but focused on YOD-specific networks. Therefore, approval by an ethics committee was deemed unnecessary according to national regulations (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). Consent was obtained from representatives of the participating organisations.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003ePotential YOD-specific collaborations\u003c/p\u003e\n\u003cp\u003eAmong the 66 regional IDC networks, information on memberships was available for 61. Cross-checking with the 39 YOD-specialised health care organisations revealed that 41 networks included at least one YOD-specialised organisation, 24 did not, and information was missing for one. Among the 39 organisations, 18 were affiliated with one network, 18 with multiple networks, and three with none.\u003c/p\u003e\n\u003cp\u003eComplementary data obtained through the short questionnaire found one additional network that included at least one YOD-specialised organisation (42 of 66; 63.6%), and two additional organisations being members of one or more networks (37 of 39; 94.9%). Seven network coordinators did not respond to the short questionnaire; in six of these cases, the targeted web search also revealed no formal affiliation with a YOD-specialised organisation.\u003c/p\u003e\n\u003cp\u003eYOD-specific networks\u003c/p\u003e\n\u003cp\u003eOf the 39 YOD-specialised health care organisations invited, 33 responded: 28 completed the YOD self-scan in full, two partially, and three declined, indicating that they did not offer services to people with YOD or that these services were not tailored to individuals with YOD. Among the 28 full responses, most organisations reported being part of a YOD-specific network at the regional level (n\u0026thinsp;=\u0026thinsp;16), with some also being active at local (n\u0026thinsp;=\u0026thinsp;2) or interregional (n\u0026thinsp;=\u0026thinsp;5) levels. The majority of regional collaborations used the DNN infrastructure, while three relied on self-established structures.\u003c/p\u003e\n\u003cp\u003eTen organisations reported not using their connection to regional IDC networks for YOD care, but six reported reaching out to other organisations when supporting an individual with YOD. One organisation considered a YOD-specific network unnecessary, arguing that having access to a general IDC network and the Knowledge Centre was sufficient. Furthermore, three organisations reported being in the process of establishing a YOD-specific network, and six expressed the need but had not yet initiated any concrete steps for reasons not captured in the self-scan. Their motivations ranged from creating an organised network that health care providers could join to strengthening knowledge exchange among stakeholders.\u003c/p\u003e\n\u003cp\u003eCharacteristics of regional YOD-specific networks\u003c/p\u003e\n\u003cp\u003eInformation was available on 16 regional YOD-specific networks.\u003c/p\u003e\n\u003cp\u003eAims of collaboration\u003c/p\u003e\n\u003cp\u003eAims varied across YOD-specific networks. Most (11 of 16) pursued two main objectives: exchanging knowledge on YOD care and jointly improving service delivery for this group. Two networks focused on only one of these objectives, while three networks reported additional aims, e.g. further formalising their existing collaboration structures for YOD (n\u0026thinsp;=\u0026thinsp;2) or facilitating peer support (n\u0026thinsp;=\u0026thinsp;1).\u003c/p\u003e\n\u003cp\u003eGovernance models and coordination\u003c/p\u003e\n\u003cp\u003eThe majority of the YOD-specific networks followed a centrally coordinated governance model (11 of 16, 68.8%), typically led by an organisation, most often an internal partner within the network (10 of 11). Coordination of these networks was often performed by a formal network coordinator (n\u0026thinsp;=\u0026thinsp;9) rather than informally by a professional combining this role with other responsibilities (n\u0026thinsp;=\u0026thinsp;2).\u003c/p\u003e\n\u003cp\u003eIn contrast, four YOD-specific networks operated under participatory governance, characterised by shared decision-making among partners. These networks were equally distributed between formal and informal coordinators. One network lacked data.\u003c/p\u003e\n\u003cp\u003eOverall, formal network coordinators had a larger contractual allocation (median: 12 hours per week; range: 2\u0026ndash;36) than informal coordinators did (median: 2; range: 0\u0026ndash;2). They were also more likely to perceive their allocated time as sufficient (7 of 8, missing in 3, versus 1 of 4, missing in 3). Formal network coordinators in participant governance models tended to have more hours allocated (median: 22; range: 8\u0026ndash;36) than those in centrally coordinated ones did (median: 12; range: 2\u0026ndash;24), whereas the reverse was observed for informal coordinators.\u003c/p\u003e\n\u003cp\u003eCross-sector collaborations\u003c/p\u003e\n\u003cp\u003eMost YOD-specific networks involved partners from all three sectors (n\u0026thinsp;=\u0026thinsp;10), although one included only collaborations within the health care sector (YOD-specific network D in Fig.\u0026nbsp;1). Figure\u0026nbsp;1 illustrates cross-sector collaborations (rows) per regional YOD-specific network (columns).\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003cdiv class=\"colspec\" align=\"left\"\u003eApproximately one-third of the fully cross-sectoral collaborations (3 of 10) reported being fully satisfied with their current composition (YOD-specific networks E, F, and I). The remaining networks (n\u0026thinsp;=\u0026thinsp;12) recognised the need to expand across sectors (red and orange cells in Fig.\u0026nbsp;1), particularly towards the social care sector, by including municipalities (n\u0026thinsp;=\u0026thinsp;5) and carer support organisations (n\u0026thinsp;=\u0026thinsp;5). In seven networks, actions had already been initiated to collaborate with partners who were currently missed.\u003c/div\u003e\n\u003c/div\u003e\n\u003cp\u003eIn the health care sector, nursing and home care organisations (n\u0026thinsp;=\u0026thinsp;14) and general practitioner care groups (n\u0026thinsp;=\u0026thinsp;10) were most commonly involved (green and orange cells in Fig.\u0026nbsp;1). In the social sector, municipalities and social welfare organisations were equally included, whereas in the policy and research sector, a regional department of the Dutch Alzheimer\u0026rsquo;s Society (n\u0026thinsp;=\u0026thinsp;11) was frequently engaged.\u003c/p\u003e\n\u003cp\u003eCollaboration types were represented as: F\u0026thinsp;=\u0026thinsp;formal, I\u0026thinsp;=\u0026thinsp;informal, AH\u0026thinsp;=\u0026thinsp;ad hoc, and M\u0026thinsp;=\u0026thinsp;missing data. Most collaborations were at least partly formalised (F) via agreements (43 of 98). Nonetheless, ad hoc collaborations (AH) without any established collaboration agreement were also common (30 of 98). Of these ad hoc collaborations, six organisations (20%) were already part of a network but were simultaneously considered desirable additions. This pattern did not occur among collaborations with formal or informal agreements.\u003c/p\u003e\n\u003cp\u003ePerceived quality and accessibility of collaborations\u003c/p\u003e\n\u003cp\u003eThe perceived quality and accessibility of collaborations varied across sectors and partners. Overall, respondents rated their collaborations positively, with no ratings of \u0026lsquo;very poor\u0026rsquo; and several ratings of \u0026lsquo;very good\u0026rsquo; (Supplementary Material S4). Collaborations with municipalities and certain medical actors (e.g., mental health organisations and health insurers) were perceived as less effective and harder to engage in. In contrast, collaborations with volunteer organisations and research centres received the highest ratings, although often based on fewer ratings. Communication among partners took place mainly through digital channels, e.g. email, MS Teams, websites, and professional referral systems. Four YOD-specific networks also held in-person meetings.\u003c/p\u003e\n\u003cp\u003eFunding and resources\u003c/p\u003e\n\u003cp\u003eStructural funding was reported in eight YOD-specific networks, of which five assessed the amount as sufficient (missing data in 3). Among these five, four had multiple funding sources, e.g. a health care organisation, a health insurer, a long-term care office, or a municipality. None of the three self-established networks received structural funding, whereas two of ten using the DNN infrastructure lacked such funding (missing data in 3).\u003c/p\u003e\n\u003cp\u003eEnablers and challenges\u003c/p\u003e\n\u003cp\u003eProcess\u003c/p\u003e\n\u003cp\u003eMost enablers and challenges reported were related to collaborative processes. Problem definitions, shared goals, and collaboration mission were frequently mentioned. Collaborations that explicitly prioritised the needs and preferences of individuals with YOD were perceived as more effective. Additionally, a strong sense of commitment, positivity, and sincerity within collaborations was often mentioned as enabling. In contrast, the absence of a shared vision regarding care provision was reported to hinder progress. Respondents described challenges in aligning regional practices and noted a disconnect between policy frameworks and practical needs. One respondent illustrated this:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eReaching regional agreements on matters such as whether a YOD-specialised case manager is always necessary proves to be challenging [\u0026hellip;] Although recommendations for regional care programmes have been developed, the reality of practice is often complex and resistant to change (Representative of organisation 83, YOD self-scan 2023).\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eTime constraints were another widely reported challenge. Respondents described the combination of heavy workloads and specific challenges inherent to YOD as limiting the priority given to collaboration efforts. Because YOD is relatively rare, participants perceived it as receiving less attention than more common conditions did. The following quote reflects this commonly reported issue:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eDue to heavy workload, care and support for YOD does not receive priority, partly because the disease is relatively rare. (Representative of organisation 125, YOD self-scan 2023)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eEnablers within the process domain included efficient and direct communication among partners, a clear understanding of each partner\u0026rsquo;s area of expertise, the (early) involvement of YOD-specialised case managers, and mutual openness and commitment to collaboration. In addition, respondents stressed the importance of formalising existing partnerships and clarifying the roles of involved organisations to strengthen sustainability of collaboration. The presence of these elements enabled collaboration, whereas their absence was perceived as a challenge. This included remarks on regional coordination, agreements with long-term care providers, and the embedding of the YOD-specific network within existing infrastructures. The complexity of organising YOD care itself also sometimes complicates collaboration. This broader concern was captured in the following quote from one respondent:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eThere remains considerable ambiguity regarding the concept of \u0026lsquo;low-volume\u0026ndash;high-complexity (LVHC)\u0026rsquo;* outside long-term care organisations. This contributes to misunderstandings about the rationale for care concentration and raises concerns about increased geographical distance from one\u0026rsquo;s home and family. (Representative of organisation 77, YOD self-scan 2023)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e*\u003c/em\u003e LVHC care refers to specialised health care for rare, complex conditions that require tailored, multidisciplinary expertise (\u003cspan class=\"CitationRef\"\u003e45\u003c/span\u003e). Although YOD is not officially recognised as LVHC, the Dutch Ministry of Health has acknowledged it as a distinct target group that should be considered within an LVHC framework context.\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eContext\u003c/p\u003e\n\u003cp\u003eThe most frequently reported challenge concerned limited organisational capacity, including shortages in staff and funding, as well as insufficient time and support for professionals to engage in collaborative efforts. Respondents described how operationalisation often stalled because of these constraints. One respondent explained:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eDespite the availability of well-developed plans, implementation is hindered by shortages in human resources and funding, especially in nursing homes. (Representative of organisation 125, YOD self-scan 2023)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eExisting relationships and attitudes towards collaboration were perceived as enabling. Respondents described how short communication lines and easy access to one another supported effective collaboration, as illustrated by a respondent who stated:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eCollaboration with case managers, general practitioners, hospitals, and day care treatment services is going very well. Communication lines are short, and we find each other easily. (Representative of organisation 55, YOD self-scan 2023)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn addition, preexisting collaborations established through joint projects in which practical issues were effectively addressed contributed to a sense of responsiveness within the network.\u003c/p\u003e\n\u003cp\u003eStructure\u003c/p\u003e\n\u003cp\u003eThe most frequently reported challenge was related to the limited flexibility of current financing mechanisms for integrated YOD care. Respondents indicated that individuals with YOD would benefit from funding arrangements that enable service delivery across organisational boundaries. However, funding is currently organised according to legislative care categories rather than individuals\u0026rsquo; care pathways, which reinforces siloed working and hampers coordinated collaboration. Two respondents described practical challenges in securing funding for this group. One example was:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eSuitable financing remains a challenge. For example, it is not financially sustainable when one resident attends day care at another care organisation. (Representative of organisation 110, YOD self-scan 2023)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn contrast, respondents described structural enablers related to network composition and cross-sector collaboration. YOD-specific networks varied in their composition and in the sectors represented. The relevance of establishing cross-sector collaborations as well as different levels of maturity was recognised. One respondent described how their network is evolving by gradually involving more partners:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n\u003cp\u003e\u003cem\u003eWe are proud to connect an increasing number of partners within our dementia care network for YOD, such as YOD-specialised case managers, general practitioners, geriatricians, day care services, and residential facilities. (Representative of organisation 125, YOD self-scan 2023)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study provides insight into how regional collaborations for YOD are organised and governed, and how this reflects national policy recommendations, addressing a recognised gap in dementia care (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). The examination of regional YOD-specific networks addressed the four aims (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e) and highlighted a persistent policy-practice gap. Current practice appears only partially aligned with the integrated care policy for YOD. Numerous potential YOD-specific collaborations were documented, as most YOD-specialised organisations were connected with regional IDC networks. Yet, only 16 regional YOD-specific networks were identified. Characteristics such as maturity, composition, and degree of formalisation differed considerably across networks. Organisations reported a range of process-related, contextual, and structural enablers of and challenges to effective collaboration, which influenced both the development and sustainability of integrated YOD-specific care networks.\u003c/p\u003e \u003cp\u003eProcess-related enablers and challenges\u003c/p\u003e \u003cp\u003eThe identified enablers included a shared, person-centred vision and the presence of a formal network coordinator. Collaborations were most successful when partners explicitly prioritised the needs of individuals with YOD. This finding aligns with the core principles of integrated care (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) and supports other findings that integrated care should be driven by the needs and values of the individual rather than by institutional structures alone (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eMost YOD-specific networks were coordinated by a formal network coordinator, even when operating under lead organisation or participant governance models. According to Provan and Kenis (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e), network coordinators are typically absent or fulfil a small task in these models. Our findings diverge from their theoretical framework and suggest that the presence of a network coordinator may be a contributing enabler for realising effective YOD-specific collaborations, regardless of the governance model. Structural funding for the network and funding for the network coordinator were assessed as two distinct elements. Although some networks had both, these were not consistently linked and therefore cannot explain the relatively high number of network coordinators among the different governance models.\u003c/p\u003e \u003cp\u003eOur results emphasise the importance of a network coordinator. Respondents stressed that connecting factors such as having mutual openness and commitment enabled YOD-specific collaborations. They also highlighted the need for regional agreements that clarify how care is organised and the roles of involved partners. Establishing connections and coordinating agreements from an independent perspective are considered the responsibility of a formal network coordinator (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). These responsibilities align with the needs and enablers mentioned by respondents. The importance of a network coordinator in IDC networks is also highlighted by an empirical study from Kroeze et al. (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Their study focused on a network administrative organisation governance model in which network coordinators are typically present. Nevertheless, others have reported that the coordination of the network is more important than the specific integrated care model adopted (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e). Neither study addressed YOD-specific networks.\u003c/p\u003e \u003cp\u003eContextual enablers and challenges\u003c/p\u003e \u003cp\u003eOrganisational capacity and relational dynamics were cited as the contextual elements influencing effective YOD-specific collaborations. Our identified challenges are consistent with literature in the broader context of the delivery of long-term care, reporting funding constraints (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e) and limited human resources (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e). One study provided a best practices framework for organising health care delivery systems for persons with ongoing care needs and their families on the basis of key challenges. The authors reported that funding and human resource issues, along with failures among organisations to collaborate as a cohesive service delivery system, constitute challenges for people in receiving good-quality and timely care (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). The identified challenges appeared particularly pronounced for YOD-specific networks, but are likely to affect other networks that organise integrated care for rare, complex conditions. Such networks may face similar challenges related to scale, fragmentation and resource constraints. Due to the low prevalence, most organisations within a regional IDC network rarely encounter people with YOD (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Respondents noted that this contributed to lower prioritisation within dementia care agendas. This lack of priority may cause organisations not to perceive YOD care as their core responsibility and less inclined to allocate time, resources and funding to YOD-specific initiatives.\u003c/p\u003e \u003cp\u003eStrong interpersonal relationships and short communication lines were consistently described as enablers of effective collaboration, regardless of the communication platform used. Collaborations from earlier joint projects that successfully addressed practical challenges were more likely to be sustained and evolve over time.\u003c/p\u003e \u003cp\u003eStructural enablers and challenges\u003c/p\u003e \u003cp\u003eStructural enablers and challenges were particularly evident in relation to funding, network composition, and formalisation. Funding mechanisms at the system level remain fragmented and insufficient. In our study, only 8 of 16 YOD-specific collaborations received structural funding, all embedded in the DNN infrastructure. The need for more flexible financing structures was expressed to deliver integrated YOD care as a network, particularly when services span multiple providers. Similar funding gaps have hindered case management programs within Dutch IDC networks (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). While a previous attempt to secure structural funding has been undertaken, it was unsuccessful (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). This finding reinforces the notion that policy aims alone are insufficient without structural follow-through. Addressing these challenges requires overarching agreements and collective investments that span organisational boundaries rather than fragmented budgets tied to individual institutions. Although the LVHC framework was not the primary focus of this study, lessons can be drawn from their structure, which demonstrates that cross-institutional funding is feasible when supported by recognised frameworks, clear role definitions, and coordinated regional governance of resource allocation (\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eMost YOD-specific networks recognised cross-sector collaborations involving partners from all three sectors as essential, yet many identified gaps, particularly in engaging social care actors such as municipalities and carer support organisations. This aligns with earlier findings that, although increased awareness of YOD has helped develop care and support, fragmentation remains due to limited integration among sectors and inconsistent involvement of social care actors (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Nevertheless, several of the YOD-specific networks had already initiated steps to involve missing partners, indicating a growing awareness of the need for broader integration consistent with international policy guidelines (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFinally, respondents frequently emphasised the need to further formalise existing collaborations. Although many collaborations were partly formalised, ad hoc arrangements remained common. Interestingly, all collaborations with organisations that were already part of the network but still considered as desirable additions were based on ad hoc arrangements. This suggests that formalisation plays a key role in effective collaborations. Moving beyond informal, goodwill-based collaborations towards institutionalised agreements, roles, and funding structures is important to sustain efficient integrated YOD care.\u003c/p\u003e \u003cp\u003eIn summary, promising examples of YOD-specific networks exist, but their development remains uneven. The interplay of processual, contextual, and structural challenges mirrors the barriers identified by Alderwick et al. (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e), who reported that cross-sector collaboration often falters when shared goals, trust, and governance clarity are insufficiently supported by system-wide resources. Our findings extend this understanding by showing that these same dynamics apply even more strongly to small and complex populations like individuals with YOD, where limited prevalence amplifies the effects of resource scarcity and unclear responsibilities.\u003c/p\u003e \u003cp\u003eStrengths and limitations\u003c/p\u003e \u003cp\u003eA key strength of this study lies in its multimethod approach, combining the targeted web search with an extensive survey of YOD-specialised organisations. This supported us to examine how the policy recommendation is currently translated into practice and to identify enablers and challenges in multiple domains. The findings provide a foundation for reflection and further development of YOD-specific networks in the Netherlands, and offer insights for other countries and those delivering integrated care to comparable small, complex populations. The co-development of the YOD self-scan with stakeholders enhanced its contextual relevance and credibility, aligning with participatory approaches in integrated care research (\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e). Data validity was strengthened by cross-checking findings from the targeted web search with network coordinators, and member checking by presenting results from the YOD self-scan to YOD-specialised organisations for feedback. In addition, the high response provided a representative overview.\u003c/p\u003e \u003cp\u003eNevertheless, some limitations must be considered. Despite the high overall response, nonresponse from numerous network coordinators and YOD-specialised health care organisations may have introduced bias and limited completeness. Reasons for nonresponse remain unclear but may reflect differences in organisational capacity or engagement with YOD-specific collaboration. In addition, the length and multidisciplinary nature of the YOD self-scan, may have increased the threshold for participation. Missing data on certain variables could have influenced the findings. Furthermore, qualitative insights were derived solely from open-ended questions, providing breadth but limiting opportunities for deeper exploration.\u003c/p\u003e \u003cp\u003eRecommendations for practice and policy\u003c/p\u003e \u003cp\u003eBuilding on the opportunities and challenges identified in our study, several recommendations can strengthen integrated care for individuals with YOD at the regional level. First, YOD-specific collaborations should be established and formalised within existing IDC networks, such as those supported by DNN. These collaborations must span sectors and include stakeholders frequently identified as missing in our study to ensure comprehensive and person-centred service delivery (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e). Clear formal agreements regarding each partner\u0026rsquo;s role, responsibilities, and contributions are needed to ensure adequate structural human and financial resources. This includes clarity on collaborations among partners delivering mainstream care and those providing YOD-specialised services. Insights can be drawn from LVHC care that show flexible financing schemes across organisational boundaries are needed to ensure the continuity of services (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eSecond, IDC networks should create conditions that enable organisations to connect through informal trust-building and to allocate time, staff, and resources specifically for YOD-related initiatives, and support them in structuring their involvement accordingly. Such transparency and alignment can help overcome challenges and foster shared responsibility, despite the low prevalence.\u003c/p\u003e \u003cp\u003eThird, strengthening integrated YOD-care requires a coherent approach in which relational trust, adequate resources, clear collaboration agreements, and system-level funding arrangements are aligned. Such coherence is necessary to address the interrelated process-, contextual-, and structural challenges identified in this study.\u003c/p\u003e \u003cp\u003eFinally, dedicated time and resources for network coordinators is essential to initiate, facilitate, and coordinate YOD-specific networks. Their involvement is crucial for connecting relevant partners across care levels and ensuring the sustainability and effectiveness of IDC (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e). To support network coordinators in learning across regions and accelerate the dissemination of best practices on local initiatives for YOD-specific collaborations, current mechanisms for knowledge sharing by the DNN should be expanded specifically for this population (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eRecommendations for future research\u003c/p\u003e \u003cp\u003eFuture research could include comparative studies across different health care systems, financing arrangements, relevant legislation frameworks, and population densities to expand knowledge on effective regional collaborations. Such studies could help to identify which approaches are most effective in strengthening integrated care for YOD and other rare, complex conditions (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). In addition, interviews or focus groups are needed to capture more nuanced insights into the roles, responsibilities and contributions of partners in YOD-specific networks. Incorporating perspectives of individuals with YOD and their carers by exploring their needs and the expectations of the different partners involved would further enrich this understanding. These insights could provide a framework for clear formal agreements, thereby supporting network coordinators, practitioners, and policy-makers. Addressing these questions would be valuable for improving integrated care delivery through YOD-specific networks and for assessing the effectiveness and impact of different models of collaboration (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e).\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eBy studying a context characterised by long-standing regional network infrastructures and a national policy emphasis on integrated care, this study provides insight into how policy recommendations for a small, complex population are reflected in current service organisation and governance.\u003c/p\u003e \u003cp\u003eOur findings show that, although regional IDC networks offer a solid foundation, YOD-specific collaborations are not yet consistently embedded and are developing unevenly across regions. This variation reflects the interplay of process-, context- and structural conditions, shaping the integrated care delivery at the regional level.\u003c/p\u003e \u003cp\u003eBy demonstrating how established mechanisms of integrated care manifest differently, and often more acutely, in networks serving a low volume population, this study extends the integrated care literature beyond more prevalent conditions. The findings highlight transferable conditions for strengthening policy-practice alignment, including coherence between policy intent, network governance, coordination capacity, and financing arrangement. These insights are relevant for improving integrated care for individuals with YOD, but also for other rare and complex populations facing similar challenges in delivering and governing services across organisational boundaries.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eAH\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eAd hoc\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eDNN\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eDementia Network Netherlands\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eF\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eFormal\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eI\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eInformal\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eIDC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eIntegrated dementia care\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eIQR\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003einterquartile range\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eLVHC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eLow-Volume-High-Complexity\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eM\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003emissing data\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eSD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eStandard deviation\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eWHO\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eWorld Health Organisation\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eYOD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eYoung-Onset Dementia\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eNot applicable, the study was not approved by an ethics committee because approval was deemed unnecessary according to national regulations (44). The study did not involve any medical interventions, such as the administrations of medication, medical treatments, of diagnostic tests, and therefore did not fall under ethical review requirements. Furthermore, the study did not involve human participants or health-related data, but instead focused on the service provision, governance and collaborations of health care organisations. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eNot applicable.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analyses during the current study are available from the corresponding author in reasonable request. \u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declared no potential conflicts of interests with respect to the research, authorship, and/or publication of this article.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis publication is part of the project YOD-INCLUDED (project no. 10510032120002) of the Dutch Dementia Research Programme, which is financed by ZonMw. ZonMw is a Dutch organisation for health research and development, focussing on promoting and funding health research and health care innovation. The views presented here are those of the authors. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors’ contributions\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe initial study design was conceived as part of a grant application by CB and RK. SW and MM designed the study. BA and CH assisted in the study design.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSW and PG conducted the data collection. MM assisted in the data collection.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSW and PG performed the statistical analysis.\u0026nbsp;CH assisted with the statistical analysis.\u003c/p\u003e\n\u003cp\u003eSW drafted the\u0026nbsp;initial\u0026nbsp;manuscript\u0026nbsp;and revised\u0026nbsp;subsequent\u0026nbsp;versions. CH contributed\u0026nbsp;to the development of the manuscript.\u0026nbsp;All authors\u0026nbsp;reviewed\u0026nbsp;versions and\u0026nbsp;approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to acknowledge the members of the YOD-INCLUDED consortium (Supplementary Material S5).\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eGoodman C, Littlechild B, Mayrhofer AM, Russell S, Shora S, Tibbs MA. Living with young onset dementia: Reflections on recent developments, current discourse, and implications for policy and practice. Aging Soc. 2021;41(11):2437\u0026ndash;45.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMayrhofer A, Mathie E, McKeown J, Bunn F, Goodman C. Age-appropriate services for people diagnosed with Young Onset Dementia (YOD): A systematic review. Aging Ment Health. 2018;22(8):927\u0026ndash;35.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eVan de Veen D, Bakker C, Peetoom K, Pijnenburg Y, Papma J, De Vugt M, et al. Provisional consensus on the nomenclature and operational definition of dementia at a young age, a Delphi study. Int J Geriatr Psychiatry. 2022;37(3):1\u0026ndash;11.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHendriks S, Peetoom K, Bakker C, Van der Flier WM, Papma JM, Koopmans R, et al. Global prevalence of young-onset dementia: A systematic review and meta-analysis. JAMA Neurol. 2021;78(9):1080\u0026ndash;90.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMillenaar JK, Bakker C, Koopmans RT, Verhey FR, Kurz A, De Vugt ME. The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: A systematic review. Int J Geriatr Psychiatry. 2016;31(12):1261\u0026ndash;76.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMillenaar JK, De Vugt ME, Bakker C, Van Vliet D, Pijnenburg YA, Koopmans RT, et al. The impact of young onset dementia on informal caregivers compared with late onset dementia: Results from the NeedYD study. Am J Geriatric Psychiatry. 2016;24(6):467\u0026ndash;74.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eThorsen K, Dourado MCN, Johannessen A. Developing dementia: The existential experience of the quality of life with young-onset dementia \u0026ndash; A longitudinal case study. Dementia. 2020;19(3):878\u0026ndash;93.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBakker C, De Vugt ME, Vernooij-Dassen M, Van Vliet D, Verhey FR, Koopmans RT. Needs in early onset dementia: A qualitative case from the NeedYD study. Am J Alzheimer's Disease Other Dementias\u0026reg;. 2010;25(8):634\u0026ndash;40.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEtters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: A review of the literature. J Am Association Nurse Practitioners. 2008;20(8):423\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWilliams T. From pillar to post - A study of younger people with dementia. Psychiatr Bull. 2001;25:384\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eStamou V, La Fontaine J, Gage H, Jones B, Williams P, O'Malley M, et al. Services for people with young onset dementia: The 'Angela' project national UK survey of service use and satisfaction. Int J Geriatr Psychiatry. 2021;36(3):411\u0026ndash;22.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eVan Vliet D, De Vugt ME, Bakker C, Koopmans RT, Verhey FR. Impact of early onset dementia on caregivers: A review. Int J Geriatr Psychiatry. 2010;25(11):1091\u0026ndash;100.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBakker C, De Vugt ME, Van Vliet D, Verhey FR, Pijnenburg YA, Vernooij-Dassen MJ, et al. Predictors of the time to institutionalization in young- versus late-onset dementia: Results from the Needs in Young Onset Dementia (NeedYD) study. J Am Med Dir Assoc. 2013;14(4):248\u0026ndash;53.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMillenaar JK, Van Vliet D, Bakker C, Vernooij-Dassen MJ, Koopmans RT, Verhey FR, et al. The experiences and needs of children living with a parent with young onset dementia: Results from the NeedYD study. Int Psychogeriatr. 2014;26(12):2001\u0026ndash;10.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKuruppu DK, Matthews BR. Young-onset dementia. Seminstd Neurol. 2013;33(4):365\u0026ndash;85.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWorld Health Organization. Integrated people-centred health services. Geneva, Switzerland: World Health Organization; 2016.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEnthoven AC. Integrated delivery systems: The cure for fragmentation. Am J Managed Care. 2009;15(10 Suppl):S284\u0026ndash;90.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eValentijn PP, Schepman SM, Opheij W, Bruijnzeels MA. Understanding integrated care: A comprehensive conceptual framework based on the integrative functions of primary care. Int J Integr Care. 2013;13:e010.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eZonneveld N, Raab J, Minkman MMN. Towards a values framework for integrated health services: An international Delphi study. BMC Health Serv Res. 2020;20(1):224.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOostra DL, Harmsen A, Nieuwboer MS, Rikkert M, Perry M. Care integration in primary dementia care networks: A longitudinal mixed-methods study. Int J Integr Care. 2021;21(4):29.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKroeze E, Huijsman R. One for all, all for one: A mixed methods case study into the role organisational and personal interests play on cooperation in Dutch integrated dementia care networks. Int J Integr Care. 2022;22(3):10.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eK\u0026uuml;mpers S, Mur I, Hardy B, Van Raak A, Maarse H. Integrating dementia care in England and The Netherlands: Four comparative local case studies. Health Place. 2006;12(4):404\u0026ndash;20.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMinkman MM, Ligthart SA, Huijsman R. Integrated dementia care in The Netherlands: A multiple case study of case management programmes. Health Soc Care Commun. 2009;17(5):485\u0026ndash;94.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNies H, Stekelenburg D, Minkman M, Huijsman R. A decade of lessons learned from integration strategies in the Netherlands. Int J Integr Care. 2021;21(4):15.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKogata T. Strengthening the national care system for young onset dementia. Int J Public Health. 2022;67:1605099.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWorld Health Organization. Roadmap: Strengthening people-centred health systems in the WHO European Region: A framework for action towards coordinated/integrated health services delivery (CIHSD). Copenhagen, Denmark: WHO Regional Office for Europe; 2013.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDementia Network Netherlands (DNN). Policy vision on regional dementia care networks. 2024.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBakker C, Verboom M, Koopmans R. Reimagining postdiagnostic care and support in young-onset dementia. J Am Med Dir Assoc. 2022;23(2):261\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYoung-Onset Dementia Knowledge Center (UKON). Scientific agenda for young-onset dementia. Amersfoort, Netherlands: Kenniscentrum Dementie op Jonge Leeftijd, UKON, Radboudumc; 2020.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDementia, The Board of the Knowledge Centre for Young-Onset. The regional care program 2020 [Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://zorgprogrammadementieopjongeleeftijd.nl/het-regionale-zorgprogramma/\u003c/span\u003e\u003cspan address=\"https://zorgprogrammadementieopjongeleeftijd.nl/het-regionale-zorgprogramma/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHollander MJ, Prince MJ. Organizing healthcare delivery systems for persons with ongoing care needs and their families: A best practices framework. Healthc Q. 2008;11(1):44\u0026ndash;54. 2.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eB\u0026eacute;land F, Hollander MJ. Integrated models of care delivery for the frail elderly: International perspectives. Gac Sanit. 2011;25:138\u0026ndash;46.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eUribe FL, Wolf-Ostermann K, Thyrian JR, Holle B. Regional and local dementia care networks. In: Martin CR, Preedy VR, editors. Diagnosis and management in dementia. Cambridge, MA: Academic; 2020. pp. 777\u0026ndash;92.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAlderwick H, Hutchings A, Mays N. Cross-sector collaboration to reduce health inequalities: a qualitative study of local collaboration between health care, social services, and other sectors under health system reforms in England. BMC Public Health. 2024;24(1):2613.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003evan Westendorp S, Hofman C, Mortier M, Appelhof B, Gerring P, Koopmans R, et al. Exploring the Delivery and Management of Specialised Post-Diagnostic Care and Support in Young-Onset Dementia: A Cross-Sectional Study. Health Serv Insights. 2025;18:11786329251388775.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eProvan KG, Kenis P. Modes of network governance: Structure, management, and effectiveness. J Public Adm Res Theor. 2007;18(2):229\u0026ndash;52.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRitchie J, Lewis J. Qualitative research practice: A guide for social science students and researchers. London, UK: Sage; 2003.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePeeters R, Westra D, Van Raak AJA, Ruwaard D. So happy together: A review of the literature on the determinants of effectiveness of purpose-oriented networks in health care. Med Care Res Rev. 2023;80(3):266\u0026ndash;82.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAnsell C, Gash A. Collaborative Governance in Theory and Practice. J Public Adm Res Theor. 2007;18(4):543\u0026ndash;71.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eParent MM, Harvey J. Towards a Management Model for Sport and Physical Activity Community-based Partnerships. Eur Sport Manage Q. 2009;9(1):23\u0026ndash;45.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTurrini A, Cristofoli D, Frosini F, Nasi G. Networking literature about determinants of network effectiveness. Public Adm. 2010;88(2):528\u0026ndash;50.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBryson JM, Crosby BC, Stone MM. Designing and Implementing Cross-Sector Collaborations: Needed and Challenging. Public Adm Rev. 2015;75(5):647\u0026ndash;63.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePlanko J, Chappin MMH, Cramer JM, Hekkert MP. Managing strategic system-building networks in emerging business fields: A case study of the Dutch smart grid sector. Ind Mark Manage. 2017;67:37\u0026ndash;51.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSubjects CCRIH. Your research: Is it subject to the WMO or not? [Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://english.ccmo.nl/investigators/legal-framework-for-medical-scientific-research/your-research-is-it-subject-to-the-wmo-or-not\u003c/span\u003e\u003cspan address=\"https://english.ccmo.nl/investigators/legal-framework-for-medical-scientific-research/your-research-is-it-subject-to-the-wmo-or-not\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKoopmans R, Leerink B, Festen DAM. Dutch long-term care in transition: A guide for other countries. J Am Med Dir Assoc. 2022;23(2):204\u0026ndash;6.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMinkman MMN, Zonneveld N, Hulsebos K, Van der Spoel M, Ettema R. The renewed development model for integrated care: A systematic review and model update. BMC Health Serv Res. 2025;25(1):434.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDraper B, Low LF, Brodaty H. Integrated care for adults with dementia and other cognitive disorders. Int Rev Psychiatry. 2018;30(6):272\u0026ndash;91.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNederlandse Zorgautoriteit. Advies bekostiging Kennis en zorg voor laag volume hoog complexe doelgroepen in de Wet langdurige zorg. Utrecht, Netherlands: Nederlandse Zorgautoriteit; 2020.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHeinrich S, Sommerfeld U, Michalowsky B, Hoffmann W, Thyrian JR, Wolf-Ostermann K, et al. How to initiate dementia care networks? Processes, barriers, and facilitators during the development process of a practice-oriented website toolkit out of research results. Int Q Community Health Educ. 2017;37(3\u0026ndash;4):151\u0026ndash;60.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMaurer M, Mangrum R, Hilliard-Boone T, Amolegbe A, Carman KL, Forsythe L, et al. Understanding the influence and impact of stakeholder engagement in patient-centered outcomes research: A qualitative study. J Gen Intern Med. 2022;37(1):6\u0026ndash;13.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Young-onset dementia (YOD), Integrated dementia care (IDC) networks, Health care governance, Health policy, Health care delivery","lastPublishedDoi":"10.21203/rs.3.rs-9242306/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9242306/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003e Fragmented care hinders access to age-appropriate services for individuals with young-onset dementia (YOD). YOD is characterised by a low-volume population with complex care needs, and its care is associated with specific challenges in both the delivery and organisation of services. Integrated care is an approach that can address these challenges, and health care policies in the Netherlands include recommendations on integrated care delivery. For YOD specifically, it is recommended to strengthen regional collaboration to support integrated care delivery. This study examines how regional collaborations for YOD are organised and governed, and how these relate to national integrated care policy recommendations.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA targeted web search complemented with a short questionnaire and a survey (\u0026lsquo;YOD self-scan\u0026rsquo;) were combined to document potential YOD-specific collaborations and identify YOD-specific networks. Quantitative and qualitative data on characteristics, enablers and challenges were analysed using descriptive statistics and deductive thematic analysis.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003ePotential YOD-specific collaborations were common; 16 regional YOD-specific networks were identified. These differed in aims, governance, coordination, cross-sectoral composition, and formalisation. Enablers of effective collaboration were shared goals, commitment, and formalisation. Challenges included time constraints, limited organisational capacity, and fragmented funding structures.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eCurrent practice appears only partially aligned with the integrated care policy for YOD as promising YOD-specific networks exist with different levels of maturity. Organisation depends on the interplay of process-related, contextual, and structural conditions requiring coherent, cross-sector approaches to overcome specific challenges inherent to rare, complex conditions. This is the first study to map YOD-specific collaborations in integrated dementia care networks, clarifying how integrated care policy for a small, complex population is reflected in practice.\u003c/p\u003e","manuscriptTitle":"Organising regional collaborations in Young-Onset Dementia care: how current practice reflects national integrated care policy recommendations","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-12 07:39:25","doi":"10.21203/rs.3.rs-9242306/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewersInvited","content":"","date":"2026-04-06T12:04:01+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-04-06T11:52:07+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-04-03T23:46:30+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-31T12:42:01+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2026-03-31T12:27:31+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"5a91cf3e-0f47-4e16-ac73-ec0531a6d7fe","owner":[],"postedDate":"April 12th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-12T07:39:26+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-12 07:39:25","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9242306","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9242306","identity":"rs-9242306","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}