Triple aim improvement for individuals, services and society in dementia care

The number of elderly people with cognitive problems who are still living at home is likely to increase. As a result, primary healthcare professionals will be increasingly required to manage and optimize treatment for dementia patients. This underlines the need to improve dementia care within primary care. We developed the DementiaNet collaborative care approach, which includes a gradual reorganization of care towards high-quality, network-based dementia care. The development, implementation, initial experiences and study design are described to evaluate the possible merits of this approach.

Although many initiatives have recently been designed, collaborative dementia care is still fragmented and far from optimal due to lack of disease-specific expertise and training and limited communication between healthcare professionals [1]. A collaborative approach could be especially important for dementia patients as manifestation of the disease is often complex and complicated by comorbidities, while loss of mental autonomy and disease awareness are specific for this disease, and determine specific care needs. Dementia patients have to cope, not only with dementia, but also with other chronic health and welfare problems. In a large Scottish study, 95% of all dementia patients also had relevant concurrent diseases [2]. Yet, collaboration between healthcare professionals is mainly scheduled ad hoc rather than structurally. This was also apparent in a Dutch study into the effectiveness of post-diagnosis dementia care of memory clinics versus general practitioners conducted in nine memory clinics [3]. In both study arms, the care process was relatively unstructured. Furthermore, care was insufficiently personalized and structured without formal assessment of individual problems and priorities or taking the individual context into account [4]. Personalization should also address informal carers, who are often faced with a high burden. Another limitation to current practice includes the lack of long-term monitoring of symptoms, signs, quality of life, caregiver burden, and feedback on quality of care and cost-effectiveness [5]. To tackle these shortcomings, the DementiaNet approach aims to reduce the burden of the disease for all involved in dementia care, including healthcare professionals, patients and their informal caregivers (quality of life, perseverance time), and societal (cost-effectiveness) impact.

DementiaNet functions as an overarching umbrella that facilitates the organization, implementation and maintenance of primary care networks, which are in direct connection with secondary care facilities for dementia. It was designed to support these networks to become an independent, sustainable and interprofessional collaborative, in which members can provide better quality of care and achieve higher effectiveness. Primary care for dementia patients in the Netherlands is characterized by complex social and financial developments. Due to the high societal and economic impact of dementia, the Dutch Government, as many others, aims for high-quality and affordable dementia care. Between 2005 and 2016 changes were instigated through the financing of four successive national dementia and elderly care improvement programs. This created a nationwide regional network structure, deployment of dementia case managers and dissemination of multidisciplinary guidelines; however, incomplete implementation and lack of structural finance caused large variation in the acceptance and adherence to the new guidelines and regulations in clinical practice. Additionally, in 2015, the Dutch Government introduced radical reforms in the financial structure of primary healthcare, resulting in shifting responsibilities for welfare and care from national and regional levels to local governments at municipality level. Responsibility for welfare was transferred to local authorities. General practitioners (GP) act as gatekeepers for medical care and community nurses (CN) determine the amount of nursing care required. Case management is not yet structurally financed; therefore, funding varies between regions and case managers are not available for all dementia patients. This new financial arrangement has created much insecurity for healthcare professionals and institutes, as well as for patients and their carers in primary care practice. The DementiaNet approach was designed taking this healthcare complexity, shifting roles and variety in clinical practice into account. A stepwise, tailor-made and bottom-up approach was chosen. Various stakeholders were consulted in designing DementiaNet. Primary care professionals and representatives of elderly and dementia patients were interviewed on their experiences, barriers and facilitators in dementia care. The theoretical framework underlying DementiaNet includes collaborative network theories, such as the conceptual framework of partnership collaboration [6], which emphasizes the importance of addressing shared ambitions, mutual gains and relationship dynamics between network participants. We also applied best practice models on quality improvement, including the Improvement Model/Plan-Do-Check-Act (PDCA) [7] and Breakthrough Series Collaborative [8], and evidence from previously implemented collaboration models, e. g. the ParkinsonNet [9] and Healthy Aging Brain Care model [10, 11]. Finally, experiences from previous primary care network projects were used. For example, as the presence of active clinical leaders emerged as the key to successful implementation, clinical leadership was added as a central theme of DementiaNet [12].

The DementiaNet approach consists of the following five central themes. These core themes form the basis for all DementiaNet networks, as the starting point for a stepwise, tailor-made approach.

DementiaNet networks are formed via a stepwise approach. The program for each network is tailored to the members’ own needs and priorities. This tailor-made approach requires the guidance of each DementiaNet team in applying the central themes. Various steps to support the network are undertaken over a 2-year period. As a wide variety of dementia care practice exists between regions, the DementiaNet approach must be adapted to local settings and needs. In some networks, team members already collaborate. Hence, these networks obviously require a different approach than those in which team members have never worked together before. In general, the following three steps are undertaken to form a network and enhance performance:

Network leaders also join a leadership support program based on the UK National Health Service (NHS) healthcare leadership model [21]. This provides individual coaching and group session workshops to improve personal leadership skills. Regular meetings facilitate long-lasting collaboration and help develop a collaborative view on healthcare [14, 22] through open discussion of task coordination and responsibilities and conflicts of interests. Prerequisites for collaboration and reflections on team performance results are also discussed in local network meetings. During the 2‑year program all network members attend interprofessional training workshops, often twice a year. Network members select training topics themselves, for example on recognition of cognitive decline, dementia diagnosis, complex behavioral problems and shared decision making.

An evaluation study provides insight into the possible merits of DementiaNet. The longitudinal mixed methods multiple case study design is in line with evaluation methods used for complex interventions. All DementiaNet networks serve as a case in this study and are followed over time. Quantitative data are collected at baseline and annually and qualitative data are collected throughout the course of the study to gain in-depth knowledge on processes and experiences of people involved i. e. care professionals, patients and informal caregivers. The evaluation study commenced at the start of the first network in January 2015 and will be concluded in the second half of 2017.

From the concept of evidence-based healthcare [22] it follows that local resources should be invested in those programs that have been studied and found to be effective. Regarding novel health care delivery systems, this is of great importance, as innovations occur in complex environments with numerous stakeholders and external influences that make the effects difficult to predict. This high level of complexity also applies to DementiaNet, emphasizing the need for a mixed methods design, especially as the approach is tailored to each network. In addition, innovations such as DementiaNet, are impossible to evaluate before implementation [23], and so implementation and evaluation occur simultaneously. For this, data are gathered from multiple sources for each network. Firstly, each network is rated on their network-based maturity, based on yearly structured interviews with the network leader(s). The rating is performed based on a Dutch model, The Primary Care Maturity Model, in which the level of network-based functioning is rated as one of four levels on eight domains [24]. Secondly, online questionnaires are completed by network members on instruments, such as team skills and attitude towards dementia. Each network is also requested to complete a set of quality indicators of care, as described, including indicators related to diagnostics in primary care setting, involvement of case management, geriatric assessment, care plan, polypharmacy check, and emergency consultations. Lastly, paper-based questionnaires are send to informal caregivers of patients within the network, including instruments to measure quality of life [25, 26], caregiver burden [27‐29], satisfaction with care [30], and health services utilization. In addition to these data sources, in-depth interviews with care professionals in the networks, as well as informal caregivers and patients are performed to gain more insight into experiences with the DementiaNet approach, identify other possible merits or challenges and to find opportunities to enhance the DementiaNet approach to fit each situation better. We use semi-structured interviews which are transcribed verbatim and subsequently coded independently by two trained researchers after which consensus is obtained to ultimately lead to overarching lessons. Quantitative and qualitative data sources will be combined to reflect on our hypothesis. We hypothesize that network maturity level will change differently for each network, depending on varying baseline situation and improvement actions. We expect that quality of care, as measured by the quality indicators, will be associated with the network maturity and will increase if the network maturity has increased. We also measure informal caregiver reported outcomes; however, we realize that the timeframe of the current evaluation study might be too short to indicate significant effect, especially as these outcomes are indirectly influenced by the organization of networks. From the data, trends are examined over time by means of growth models. Not only are measurements within each network investigated but data between different networks are compared to identify improvement patterns. This is facilitated by natural contrasts between networks, as each baseline level differs and will vary in development during the 2‑year course. Qualitative data enables us to explain findings and patterns. Additionally, specific elements of the approach are assessed for effectiveness, including the DementiaNet leadership program and communication between GPs and CNs, as key players within the networks.

The first generation of DementiaNet currently includes 18 networks, distributed throughout the Netherlands. These networks are comprised of an average of 10 care professionals, and range from 5 to 22. The most frequently represented disciplines are GPs, CNs, CMs, and practice nurses. Other disciplines include allied health care professionals, such as physiotherapists and occupational therapists, and welfare professionals. In five networks, volunteers, interested groups or carers of dementia patients participate as team members. In total, the healthcare professionals in these networks provided care for over 278 community-dwelling dementia patients at baseline. As expected, the networks varied considerably regarding their situation on enrolment. Some networks had already worked together intensively for a long time and had already established reasonable levels of collaboration and communication. Of the networks six worked together in a program for complex elderly patients before they entered the DementiaNet program. Contrary, the majority of health care professionals were still focused on getting to know each other and formulating agreements on sharing responsibilities in care processes. This variety between networks is also reflected in the quality indicators, which show a large heterogeneity and indicate that improvements are still needed in several domains.

In general, the PDCA method to design quality improvement cycles is appreciated by healthcare professionals, as it requires them to focus on one or two specific aims at one time, for which they can draw up a concrete action plan. Since these cycles are based on each networks’ own goals and priorities, a wide variety of improvement targets were defined, including: improvement of collaborative skills, increase knowledge on management of behavioral changes, implementation of shared care plans for all professionals involved, enhancement of diagnostic expertise in the general practice, and optimization of the format of multidisciplinary team meetings.

With DementiaNet, we aim to work towards high-quality, network-based care. These networks are organized on a local level, including healthcare professionals from medical, care and social disciplines. Based on theory, literature and experiences, we designed a stepwise approach to increase the quality of dementia care, including multiple elements on quality improvement, interprofessional learning and collaboration, and clinical leadership. So far, our initial experiences and results confirm the effectiveness of this DementiaNet design, as a tailor-made integrated care innovation, directly built on the differences and needs in clinical dementia practice. Although, initially, we aim to enhance dementia care, the basics of DementiaNet are general and might also, therefore, serve as a model to increase quality of healthcare for other populations, for example, frail elderly and patients that require palliative care.

More patients with dementia will live at home for longer periods of time, which highlights the need to improve dementia care within primary care. DementiaNet improves local collaboration amongst primary healthcare professionals to provide care for community-dwelling elderly with dementia and their informal careers. Our mission is to deliver added value for patients, caregivers, healthcare services and society, by realizing an innovative, cost-effective change in care processes, finely tuned for local, collaborating professionals. We engage patients and carers, and start from their perspectives, which we adopt in line with network and system-based methodologies. As many themes and activities are generally applicable, the DementiaNet approach might also serve as a model towards enhanced collaboration and quality improvement for other populations.