In constant search of the good: a qualitative study into insiders' perspectives on living well with dementia.

Introduction: The new concept of 'living well with dementia' is currently gaining traction in practice, policy, and research. However, people with dementia and their carers' own understanding of this concept has not received much scholarly attention. This is because empirical studies into living well with dementia are predominantly quantitative; there are only a few qualitative studies on this topic. This study therefore sets out to investigate what living well means for 'insiders' in an everyday context. Methods: To explore insiders' own perspectives on living well with dementia, we conducted interviews and focus group discussions with 21 dementia stakeholders. The study included ten individuals with mild-to-moderate dementia living at home, five family carers who are or have been involved in the care for a person with dementia, and six health and social care professionals. Results: Living well with dementia, for our study participants, revolves around shaping their daily lives according to their values. In this sense, living well with dementia is no different than without. As it involves the values of the person with dementia and those of their social network, living well is both an individual and a collective concern. Having dementia undermines people with dementia's ability to substantiate their values, but it is still possible to live well. As they attempt to shape living well with dementia, respondents encounter tensions within the social network and within the person with dementia. To handle these tensions, they work for mutual attunement by using sensitivity and switching between leading and following in social interactions. Discussion: Living well with dementia in a daily context is a dynamic process in which people with dementia, family carers, and professionals constantly seek the good together. This insight contributes to a better understanding of stakeholders' ongoing, invisible efforts to mutually attune. It may also help bypass dichotomizing approaches to dementia. Finally, it opens up new venues for research into reciprocity in the care collective. The article closes with recommendations to improve dementia care and support in light of these findings.

Persoonsgerichte zorg in de praktijk.

Het begrip persoonsgericht werken is niet meer weg te denken uit de zorg voor mensen met dementie. Er is echter weinig bekend over hoe zorgmedewerkers in verpleeghuizen invulling geven aan persoonsgericht werken. In deze kwalitatieve studie staat de vraag centraal op welke manier zorgprofessionals en naasten de persoonsgerichte elementen persoonsbeeld, communicatie, omgeving en waardigheid terugzien en toepassen in de dagelijkse zorg en wat zij hiervan vinden. Vijf zorgprofessionals en zeven naasten van bewoners met dementie zijn hierover geïnterviewd waarna de interviews zijn geanalyseerd met behulp van thematische analyse. Naast vier thema's die betrekking hadden op de persoonsgerichte elementen kwamen twee thema's over de randvoorwaarden voor het leveren van persoonsgerichte zorg naar voren. Professionals and naasten beschreven diverse situaties waarin persoonsgericht werd gehandeld, maar ook waarin dat niet het geval was. Vooral in de communicatie ervoeren zorgprofessionals and naasten hiaten in persoonsgerichtheid richting bewoners, waarbij naasten zelf graag meer gehoord wilden worden door de zorgprofessionals. Behalve bekwaamheid van zorgverleners bleken voldoende personeel and tijd randvoorwaarden voor persoonsgerichte zorg. Met scholing over dementie and persoonsgerichte zorg, kleine aanpassingen and betere afstemming met naasten kan echter ook met het beschikbare personeel mogelijk al veel bereikt worden in de zorg voor bewoners met dementie.

Are older people worse off in 2040 regarding health and resources to deal with it? - Future developments in complex health problems and in the availability of resources to manage health problems in the Netherlands.

Introduction: Developing sustainable health policy requires an understanding of the future demand for health and social care. We explored the characteristics of the 65+ population in the Netherlands in 2020 and 2040, focusing on two factors that determine care needs: (1) the occurrence of complex health problems and (2) the availability of resources to manage health and care (e.g., health literacy, social support). Methods: Estimations of the occurrence of complex health problems and the availability of resources for 2020 were based on registry data and patient-reported data. Estimations for 2040 were based on (a) expected demographic developments, and (b) expert opinions using a two-stage Delphi study with 26 experts from policy making, practice and research in the field of health and social care. Results: The proportion of people aged 65+ with complex health problems and limited resources is expected to increase from 10% in 2020 to 12% in 2040 based on demographic developments, and to 22% in 2040 based on expert opinions. There was high consensus (>80%) that the proportion with complex health problems would be greater in 2040, and lower consensus (50%) on an increase of the proportion of those with limited resources. Developments that are expected to drive the future changes refer to changes in multimorbidity and in psychosocial status (e.g., more loneliness). Conclusion: The expected increased proportion of people aged 65+ with complex health problems and limited resources together with the expected health and social care workforce shortages represent large challenges for public health and social care policy.

Supporting Resilience of Older Adults with Cognitive Decline Requires a Multi-Level System Approach.

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.

Assessing the experience of person-centred coordinated care of people with chronic conditions in the Netherlands: Validation of the Dutch P3CEQ.

BACKGROUND: Countries are adapting their health and social care systems to better meet the needs of growing populations with (multiple) chronic conditions. To guide this process, assessment of the 'patient experience' is becoming increasingly important. For this purpose, the Person-Centred Coordinated Care Experience Questionnaire (P3CEQ) was developed in the United Kingdom, and translated into several languages. AIM: This study aimed to assess the internal and construct validity of the Dutch P3CEQ to capture the experience of person-centred coordinated care of people with chronic conditions in the Netherlands. PARTICIPANTS AND METHODS: Adults with chronic conditions (N = 1098) completed the Dutch P3CEQ, measures of health literacy and patient activation, and reported the use and perceived quality of care services. Data analysis included Principal Component and reliability analysis (internal validity), analysis of variance and Student's T-tests (construct validity). RESULTS: The two-component structure found was pretty much the same as in the UK validation study. Sociodemographic correlates also resembled those found in the United Kingdom. Women, persons who were less educated, less health-literate or less activated experienced less person-centred coordinated care. P3CEQ scores correlated positively with general practitioner performance scores and quality ratings of the total care received. CONCLUSION: The Dutch P3CEQ is a valid instrument to assess the experience of person-centred coordinated care among people with chronic conditions in the Netherlands. Awareness of inequity and more attention to communication skills in professional training are needed to ensure that care professionals better recognize the needs of women, lower educated or less health-literate persons, and improve their experiences of care. PATIENT CONTRIBUTION: The P3CEQ has been developed in collaboration with a range of stakeholders. Eighteen persons with (multiple) chronic conditions participated as patient representatives and codesign experts in (four) codesign workshops. Other patient representatives participated in cognitive testing of the English-language instrument. The usability of the P3CEQ to capture the experience of person-centred coordinated care of older persons has been examined by interviewing 228 older European service users, including 13 living in the Netherlands, as part of the SUSTAIN project. More than a thousand persons with chronic conditions participated in the validation study of the Dutch P3CEQ.

Safety risks among frail older people living at home in the Netherlands - A cross-sectional study in a routine primary care sample.

Frail older people face a range of problems and risks that could undermine their ability to live safely at home. A comprehensive overview of these risks, from a multidimensional perspective, is currently lacking. This study aims to examine the prevalence of risks in multiple domains of life among frail older people living at home. We used cross-sectional data from 824 people aged 65 years and older, who received a comprehensive geriatric assessment (the interRAI Home Care [interRAI-HC]) between 2014 and 2018, as part of routine care from 25 general practices in the region of West-Friesland, the Netherlands. The interRAI-HC identifies amenable risks related to people's clinical conditions, functioning, lifestyle and behaviour, and social and physical environment. Descriptive statistics were used to examine population characteristics (age, gender, marital status, living arrangements and presence of chronic conditions) and prevalence of risks. Most common risks were related to people's clinical conditions (i.e cardio-respiratory health, urinary incontinence, pain), functioning (i.e. limitations in instrumental activities of daily living and mood) and social environment (i.e. limitations in informal care and social functioning). More than 80% of frail older people faced multiple risks, and often on multiple domains of life simultaneously. People experiencing multiple risks per person, and on multiple domains simultaneously, were more often widowed and living alone. The multidimensional character of risks among frail older people living at home implies that an integrated approach to care, comprising both health and social care, is necessary. Insight in the prevalence of these risks can give direction to care allocation decisions.

Working at Green Care Farms and Other Innovative Small-Scale Long-Term Dementia Care Facilities Requires Different Competencies of Care Staff.

The culture change movement within long-term care in which radical changes in the physical, social and organizational care environments are being implemented provides opportunities for the development of innovative long-term care facilities. The aim of this study was to investigate which competencies care staff working at green care farms and other innovative types of small-scale long-term dementia care facilities require, according to care staff themselves and managers, and how these competencies were different from those of care staff working in more traditional large-scale long-term dementia care facilities. A qualitative descriptive research design was used. Interviews were conducted with care staff (n = 19) and managers (n = 23) across a diverse range of long-term facilities. Thematic content analysis was used. Two competencies were mainly mentioned by participants working in green care farms: (1) being able to integrate activities for residents into daily practice, and (2) being able to undertake multiple responsibilities. Two other competencies for working in long-term dementia care in general were identified: (3) having good communication skills, and (4) being able to provide medical and direct care activities. This study found unique competencies at green care farms, showing that providing care in innovative long-term care facilities requires looking further than the physical environment and the design of a care facility; it is crucial to look at the role of care staff and the competencies they require.

A Cross-European Study of Informal Carers' Needs in the Context of Caring for Older People, and their Experiences with Professionals Working in Integrated Care Settings.

INTRODUCTION: Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them. It is therefore important that health and social care professionals are knowledgeable about and responsive to informal carers' needs. This study explores informal carers' own needs within the context of caregiving; and examines, from the informal carers' perspective, the extent to which professionals assess, understand and are responsive to informal carers' needs. METHODS: We interviewed (2016-2018) 47 informal carers of older people being served by 12 integrated care initiatives across seven countries in Europe. The interviews were thematically coded inductively and analysed. RESULTS: Informal carers reported that professionals treated them with respect and made efforts to assess and respond to their needs. However, even though professionals encouraged informal carers to look after themselves, informal carers' needs (e.g., for respite, healthcare) were insufficiently addressed, and informal carers tended to prioritize older people's needs over their own. DISCUSSION AND CONCLUSION: Informal carers need better support in caring for their own health. Health professionals should have regular contact with informal carers and proactively engage them in ongoing needs assessment, setting action plans for addressing their needs, and identifying/accessing appropriate support services. This will be important if informal carers are to continue their caregiving role without adverse effects to themselves.

Measuring Older Peoples' Experiences of Person-Centred Coordinated Care: Experience and Methodological Reflections from Applying a Patient Reported Experience Measure in SUSTAIN.

INTRODUCTION: While several evaluation studies on (cost-)effectiveness of integrated care have been conducted in recent years, more insight is deemed necessary into integrated care from the perspective of service users. In the context of a European project on integrated care for older people living at home (SUSTAIN), this paper shares the experience and methodological reflections from applying a Patient Reported Experience Measure (PREM) on person-centred coordinated care -the P3CEQ- among this population. METHODS: A combination of quantitative and qualitative data and analysis methods was used to assess the usability and the quality of applying a PREM among older people presenting complex care needs, using the P3CEQ delivery in SUSTAIN as a case study. 228 service users completed the P3CEQ and nine SUSTAIN researchers participated in a consultation about their experience administering the questionnaire. P3CEQ scores were analysed quantitatively using principal component analysis and multilevel linear regression. P3CEQ open responses and researcher notes collected when administering the questionnaire were thematically analysed. RESULTS: Service user inclusion was high and most P3CEQ items had low non-response rates. Quantitative analysis and researcher experience indicate the relevance of face-to-face administration for obtaining such an amount of data in this population group. The presence of a carer increased inclusion of more vulnerable respondents, such as the cognitively impaired, but posed a challenge in data interpretation. Although several P3CEQ items were generally understood as intended by questionnaire developers, the analysis of open responses highlights how questions can lead to diverging and sometimes narrow interpretations by respondents. Cognitive impairment and a higher educational attainment were associated with lower levels of perceived person-centredness of care. CONCLUSION: This study shows essential preconditions to meaningfully collect and analyse PREM data on older peoples' experiences with integrated care: face-to-face administration away from care providers, collection of reasons for non-response and open comments providing nuances to answers, and multilevel modelling taking into account diversity in the target population. Several areas of improvement for future PREM use in this population have been identified: use of administration and coding guides, inclusion of clear and easy to understand definitions and examples illustrating what questions do and do not mean, measures of the expectations of person-centred coordinated care, and procedures ensuring sound ethical research. These methodological learnings can enhance future evaluation of integrated care from a service user perspective.

"It's Like Juggling, Constantly Trying to Keep All Balls in the Air": A Qualitative Study of the Support Needs of Working Caregivers Taking Care of Older Adults.

Many informal caregivers of older adults combine their caregiving tasks with a paid job. Adequate support is important to enable them to combine paid work with caregiving, while maintaining their health and wellbeing. To date, however, knowledge about working caregivers' support needs is fragmented. This study, therefore, aimed to obtain more insight into the support needs of working caregivers of older adults. We conducted six online semi-structured focus group interviews with in total 25 working caregivers of older adults living at home. Data were complemented with information from seven working caregivers participating in the study's advisory board. Data were analyzed using inductive and deductive thematic analysis. Six themes related to working caregivers' needs were identified: (1) Recognition of caregivers, including the challenges they face; (2) Attention for caregivers' health, wellbeing and ability to cope; (3) Opportunities to share care responsibilities; (4) Help with finding and arranging care and support; (5) Understanding and support from the work environment; (6) Technological support tailored to the needs and capacities of caregivers and older adults. To address these needs, working caregivers suggested several options in multiple domains of life (i.e., work, home and social life, care environment, personal health and wellbeing). To successfully support them, a multi-faceted effort, involving actors from multiple settings, is needed.

The Participation of Older People in the Concept and Design Phases of Housing in The Netherlands: A Theoretical Overview.

In the Netherlands, there is a growing need for collective housing for older people to bridge the gap between ageing-in-place and institutional care facilities. Participation of older people in the concept and design phases is important to tune the market supply to the needs of (future) residents, yet social entrepreneurs find it challenging to involve older people. This commentary explores various ways older people can participate in the development of new housing initiatives. The ladder of citizen participation is applied to explore different roles that (future) residents could play with levels of influence varying from non-participation to citizen power. Considerations for meaningful participation are discussed, in order to show how collaborations can be formed between (future) residents and decision makers.

Predictors of Frailty and Vitality in Older Adults Aged 75 years and Over: Results from the Longitudinal Aging Study Amsterdam.

INTRODUCTION: Frailty can be seen as a continuum, from fit to frail. While many recent studies have focused on frailty, much less attention has been paid to the other end of the continuum: the group of older adults that remain (relatively) vital. Moreover, there is a lack of studies on frailty and vitality that investigate predictors from multiple domains of functioning simultaneously. The aim of this study was to identify predictors of frailty as well as vitality among older adults aged 75 years and over. METHODS: We used longitudinal data from 569 adults aged ≥75 years who participated in the Longitudinal Aging Study Amsterdam. Predictors from the sociodemographic, social, psychological, lifestyle, and physical domains of functioning were measured at T1 (2008-2009). We used the frailty index (FI) to identify frail (FI ≥ 0.25) and vital (FI ≤ 0.15) respondents at follow-up, 3 years later (T2: 2011-2012). We conducted logistic regression analyses with backward stepwise selection to develop and internally validate our prediction models. RESULTS: The prevalence of frailty in our sample at follow-up was 49.4% and the prevalence of vitality was 18.3%. Predictors of frailty and vitality partly overlapped and included age, depressive symptoms, number of chronic diseases, and self-rated health. We also found predictors that did not overlap. Male sex, moderate alcohol use, more emotional support received, and no hearing problems, were predictors of vitality. Lower cognitive functioning, polypharmacy, and pain were predictors of frailty. The final model for vitality explained 42% of the variance and the final model for frailty explained 48%. Both models had a good discriminative value (area under ROC-curve [AUC] vitality: 0.88; AUC frailty: 0.85). CONCLUSION: Among older adults aged 75 years and over, predictors of frailty only partially overlap with predictors of vitality. The readily accessible predictors in our models may help to identify older adults who are likely to be vital, or who are at risk of frailty.

Advancing integrated care evaluation in shifting contexts: blending implementation research with case study design in project SUSTAIN.

BACKGROUND: Despite many studies evaluating the effectiveness of integrated care, evidence remains inconsistent. There is increasing commentary pointing out the mismatch between the ability to capture the somewhat 'illusive' impact of integrated care initiatives and programmes, and the most appropriate way to do this. Focusing on methodology, this paper describes and critically reviews the experiences of SUSTAIN, a Horizon 2020 funded project (2015-2019) with the purpose of advancing knowledge and understanding of cross-European integrated care evaluation. SUSTAIN sought to improve integrated care initiatives for older people in seven countries, and to maximise the potential for knowledge transfer and application across Europe. The methods approach drew from implementation research, employing the participative Evidence Integration Triangle (EIT) and incorporating a mixed method, multiple embedded case study design. A core set of qualitative and quantitative indicators, alongside context and process data, were created and tested within four key project domains (person-centredness, prevention-orientation, safety and efficiency). The paper critically discusses the overall approach, highlighting the value of the EIT and case study design, and signalling the challenges of data collection with frail older people and stakeholder involvement at the sites, as well as difficulties developing the core set of indicators. CONCLUSIONS: Lessons learned and recommendations for advancing integrated care evaluation are put forward that focus on the status of integrated care as a complex intervention and a process. The use of implementation research methods and case study design are recommended as an additional evaluation approach for researchers to consider, alongside suggested ways of improving methods of data collection with frail populations and cost analysis.

Supporting Older People to Live Safely at Home - Findings from Thirteen Case Studies on Integrated Care Across Europe.

INTRODUCTION: While many different factors can undermine older people's ability to live safely at home, safety as an explicit aspect of integrated care for older people living at home is an underexplored topic in research. In the context of a European project on integrated care, this study aims to improve our understanding of how safety is addressed in integrated care practices across Europe. METHODS: This multiple case study included thirteen integrated care sites from seven European countries. The Framework Method guided content analyses of the case study reports. Activities were clustered into activities aimed at identifying and managing risks, or activities addressing specific risks related to older people's functioning, behaviour, social environment, physical environment and health and social care receipt. RESULTS: Case studies included a broad range of activities addressing older people's safety. Although care providers felt they sufficiently addressed safety issues, older people were often concerned and insecure about their safety. Attention to the practical and social aspects of safety was often insufficient. CONCLUSIONS AND DISCUSSION: Integrated care services across Europe address older people's safety in many ways. Further integration of health and social care solutions is necessary to enhance older people's perceptions of safety.

Improving Person-Centredness in Integrated Care for Older People: Experiences from Thirteen Integrated Care Sites in Europe.

INTRODUCTION: Although person-centredness is a key principle of integrated care, successfully embedding and improving person-centred care for older people remains a challenge. In the context of a cross-European project on integrated care for older people living at home, the objective of this paper is to provide insight at an overarching level, into activities aimed at improving person-centredness within the participating integrated care sites. The paper describes experiences with these activities from the service providers' and service users' perspectives. METHODS: A multiple embedded case study design was conducted that included thirteen integrated care sites for older people living at home. RESULTS: Service providers were positive about the activities that aimed to promote person-centred care and thought that most activities (e.g. comprehensive needs assessment) positively influenced person-centredness. Experiences of service users were mixed. For some activities (e.g. enablement services), discrepancies were identified between the views of service providers and those of service users. DISCUSSION AND CONCLUSION: Evaluating activities aimed at promoting person-centredness from both the service providers' and service users' perspectives showed that not all efforts were successful or had the intended consequences for older people. Involvement of older people in designing improvement activities could ensure that care and support reflect their needs and preferences, and build positive experiences of care and support.

Care Farming for People with Dementia; What Can Healthcare Leaders Learn from This Innovative Care Concept?

There is growing recognition that traditional dementia care models fall short for people with dementia and their family caregivers. This has led to a call for new dementia care approaches. In response to this call, innovations in long-term dementia care are taking place both in the community and in residential care. One of these innovations is the care concept called "care farming." Care farms are farms that combine agricultural activities with care and support services for a variety of client groups, including people with dementia. Although the concept is being implemented in an increasing number of countries, the Netherlands and Norway are still front-runners in providing and researching this innovative dementia care approach. Over the last couple of years, several research projects have been carried out in these countries addressing a wide range of issues related to dementia care provision at care farms and using a wide range of research methods. This paper synthesizes the knowledge that has been generated in these research projects. By sharing the knowledge obtained in the Netherlands and Norway, we hope to inspire leaders in healthcare undertaking similar efforts to innovate care for the increasing number of people with dementia. By providing starting-points for future research, we additionally hope to contribute to a research agenda to further advance the field.

Addressing safety risks in integrated care programs for older people living at home: a scoping review.

BACKGROUND: Many older people live at home, often with complex and chronic health and social care needs. Integrated care programs are increasingly being implemented as a way to better address these needs. To support older people living at home, it is also essential to maintain their safety. Integrated care programs have the potential to address a wide range of risks and problems that could undermine older people's ability to live independently at home. The aim of this scoping review is to provide insight into how integrated care programs address safety risks faced by older people living at home - an area that is rather underexplored. METHODS: Safety was conceptualised as preventing or reducing the risk of problems, associated with individual functioning and behaviour, social and physical environments, and health and social care management, which could undermine older people's ability to live independently at home. For this scoping review a systematic literature search was performed to identify papers describing integrated care programs where at least one intervention component addressed safety risks. Data were extracted on the programs' characteristics, safety risks addressed, and the activities and interventions used to address them. RESULTS: None of the 11 programs included in this review explicitly mentioned safety in their goals. Nevertheless, following the principles of our conceptual framework, the programs appeared to address risks in multiple domains. Most attention was paid to risks related to older people's functioning, behaviour, and the health and social care they receive. Risks related to people's physical and social environments received less attention. CONCLUSION: Even though prevention of safety risks is not an explicit goal of integrated care programs, the programs address a wide range of risks on multiple domains. The need to address social and environmental risks is becoming increasingly important given the growing number of people receiving care and support at home. Prioritising a multidimensional approach to safety in integrated care programs could enhance the ability of health and social care systems to support older people to live safely at home.

Unknown makes unloved-A case study on improving integrated health and social care in the Netherlands using a participatory approach.

Many initiatives integrating health and social care have been implemented in order to provide adequate care and support to older people living at home. Further development of existing initiatives requires iterative processes of developing, implementing and evaluating improvements to current practice. This case study provides insight into the process of improving an existing integrated care initiative in the Netherlands. Using a participatory approach, researchers and local stakeholders collaborated to develop and implement activities to further improve collaboration between health and social care professionals. Improvement activities included interprofessional meetings focussing on reflection and mutual learning and workplace visits. Researchers evaluated the improvement process, using data triangulation of multiple qualitative and quantitative data sources. According to participating professionals, the improvement activities improved their communication and collaboration by establishing mutual understanding and trust. Enabling factors included the safe and informal setting in which the meetings took place and the personal relationships they developed during the project. Different organisational cultures and interests and a lack of ownership and accountability among managers hindered the improvement process, whereas issues such as staff shortages, time constraints and privacy regulations made it difficult to implement improvements on a larger scale. Still, the participatory approach encouraged the development of partnerships and shared goals on the level of both managers and professionals. This case study highlights that improving communication between professionals is an important first step in improving integrated care. In addition, it shows that a participatory approach, in which improvements are co-created and tailored to local priorities and needs, can help in the development of shared goals and trust between stakeholders with different perspectives. However, stakeholders' willingness and ability to participate in such an improvement process is challenged by many factors.

Exploring improvement plans of fourteen European integrated care sites for older people with complex needs.

Integrated care programmes are increasingly being put in place to provide care to older people living at home. However, knowledge about further improving integrated care is limited. In fourteen integrated care sites in Europe, plans to improve existing ways of working were designed, implemented and evaluated to enlarge the understanding of what works and with what outcomes when improving integrated care. This paper provides insight into the existing ways that the sites were working with respect to integrated care, their perceived difficulties and their plans for working towards improvement. The seven components of the Expanded Chronic Care Model provided a conceptual framework for describing the fourteen sites. Although sites were spread across Europe and differed in basic characteristics and existing ways of working, a number of difficulties in delivering integrated care were similar. Existing ways of working and improvement plans mostly focused on three components of the Expanded Chronic Care Model: delivery system design; decision support; self-management. Two components were represented less frequently in existing ways of working and improvement plans: building healthy public policy; building community capacity. These findings suggest that broadly-based prevention efforts, population health promotion and community involvement remain limited. From the Expanded Chronic Care Model perspective, therefore, opportunities for improving integrated care outcomes may continue to be restricted by the narrow focus of developed improvement plans.