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.

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.

"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.

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.

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.

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.

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.

Assigning a Prominent Role to "The Patient Experience" in Assessing the Quality of Integrated Care for Populations with Multiple Chronic Conditions.

In response to growing populations of citizens with multiple chronic conditions, integrated care models are being implemented in many countries. Based on our experiences from three EU co-funded actions (ICARE4EU, SUSTAIN, JA-CHRODIS), we notice that users' experiences are not always taken into account when assessing the quality of integrated care, whereas research shows that it is in this particular domain that quality improvement is most evident. The greatest value of integrated care for people with multiple chronic conditions may not lie in its potential to improve their health or reduce their use of services, but in its potential to improve their care experience, by strengthening person-centred decision-making and delivering care and support accordingly. Collaborations of care providers, (representatives of) people with multiple chronic conditions and researchers need to develop appropriate methods and measures to include users' experiences in quality assessment of integrated care.

Comprehensive geriatric assessments in integrated care programs for older people living at home: A scoping review.

In many integrated care programs, a comprehensive geriatric assessment (CGA) is conducted to identify older people's problems and care needs. Different ways for conducting a CGA are in place. However, it is still unclear which CGA instruments and procedures for conducting them are used in integrated care programs, and what distinguishes them from each other. Furthermore, it is yet unknown how and to what extent CGAs, as a component of integrated care programs, actually reflect the main principles of integrated care, being comprehensiveness, multidisciplinarity and person-centredness. Therefore, the objectives of this study were to: (a) describe and compare different CGA instruments and procedures conducted within integrated care programs for older people living at home, and (b) describe how the principles of integrated care were applied in these CGAs. A scoping review of the scientific literature on CGAs in the context of integrated care was conducted for the period 2006-2018. Data were extracted on main characteristics of the identified CGA instruments and procedures, and on how principles of integrated care were applied in these CGAs. Twenty-seven integrated care programs were included in this study, of which most were implemented in the Netherlands and the United States. Twenty-one different CGAs were identified, of which the EASYcare instrument, RAI-HC/RAI-CHA and GRACE tool were used in multiple programs. The majority of CGAs seemed to reflect comprehensiveness, multidisciplinarity and person-centredness, although the way and extent to which principles of integrated care were incorporated differed between the CGAs. This study highlights the high variability of CGA instruments and procedures used in integrated care programs. This overview of available CGAs and their characteristics may promote (inter-)national exchange of CGAs, which could enable researchers and professionals in choosing from the wide range of existing CGAs, thereby preventing them from unnecessarily reinventing the wheel.

The SUSTAIN Project: A European Study on Improving Integrated Care for Older People Living at Home.

INTRODUCTION: Integrated care programmes are increasingly being put in place to provide care to older people who live at home. Knowledge of how to further develop integrated care and how to transfer successful initiatives to other contexts is still limited. Therefore, a cross-European research project, called Sustainable Tailored Integrated Care for Older People in Europe (SUSTAIN), has been initiated with a twofold objective: 1. to collaborate with local stakeholders to support and monitor improvements to established integrated care initiatives for older people with multiple health and social care needs. Improvements focus on person-centredness, prevention orientation, safety and efficiency; 2. to make these improvements applicable and adaptable to other health and social care systems, and regions in Europe. This paper presents the overall structure and approach of the SUSTAIN project. METHODS: SUSTAIN uses a multiple embedded case study design. In three phases, SUSTAIN partners: (i) conduct interviews and workshops with stakeholders from fourteen established integrated care initiatives to understand where they would prefer improvements to existing ways of working; (ii) collaborate with local stakeholders to support the design and implementation of improvement plans, evaluate implementation progress and outcomes per initiative, and carry out overarching analyses to compare the different initiatives, and; (iii) translate knowledge and experience to an online roadmap. DISCUSSION: SUSTAIN aims to generate evidence on how to improve integrated care, and apply and transfer the knowledge gained to other health and social care systems, and regions. Lessons learned will be brought together in practical tools to inform and support policy-makers and decision-makers, as well as other stakeholders involved in integrated care, to manage and improve care for older people living at home.

Innovating dementia care; implementing characteristics of green care farms in other long-term care settings.

ABSTRACTBackground:People with dementia at green care farms (GCFs) are physically more active, have more social interactions, are involved in a larger variety of activities, and come outdoors more often than those in other long-term dementia care settings. These aspects may positively affect health and well-being. This study explored which and how characteristics of GCFs could be implemented in other long-term dementia care settings, taking into account possible facilitators and barriers. METHODS: Semi-structured interviews were conducted with 23 professionals from GCFs, independent small-scale long-term care facilities, and larger scale long-term care facilities in the Netherlands. The framework method was used to analyze the data. RESULTS: Several characteristics of GCFs (e.g. homelike aspects, domestic activities, and access to outdoor environments) have already been applied in other types of long-term dementia care settings. However, how and the extent to which these characteristics are being applied differ between GCFs and other types of long-term dementia care settings. Facilitators and barriers for the implementation of characteristics of GCFs were related to the physical environment in which the care facility is situated (e.g. the degree of urbanization), characteristics and competences of staff members (e.g. flexibility, creativity), characteristics and competences of managers (e.g. leadership, vision), and the political context (e.g. application of risk and safety protocols). CONCLUSION: Several characteristics can be implemented in other dementia care settings. However, to realize innovation in dementia care it is important that not only the physical environment but also the social and organizational environments are supporting the process of change.

A four-domain approach of frailty explored in the Doetinchem Cohort Study.

BACKGROUND: Accumulation of problems in physical, psychological, cognitive, or social functioning is characteristic for frail individuals. Using a four-domain approach of frailty, this study explored how sociodemographic and lifestyle factors, life events and health are associated with frailty. METHODS: The study sample included 4019 men and women (aged 40-81 years) examined during the fifth round (2008-2012) of the Doetinchem Cohort Study. Four domains of frailty were considered: physical (≥4 of 8 criteria: unintentional weight loss, exhaustion, strength, perceived health, walking, balance, hearing and vision impairments), psychological (2 criteria: depressive symptoms, mental health), cognitive (<10th percentile on global cognitive functioning), and social frailty (≥2 of 3 criteria: loneliness, social support, social participation). Logistic regression was used to study the cross-sectional association of sociodemographic factors, lifestyle, life events and chronic diseases with frailty domains. RESULTS: About 17% of the population was frail on one or more domains. Overlap between the frailty domains was limited since 82% of the frail population was frail on one domain only. Low educated respondents were at higher risk of being psychologically and socially frail. Having multiple diseases was associated with a higher risk of being physically and psychologically frail. Being physically active was consistently associated with a lower risk of frailty on each of the four domains. Short or long sleep duration was associated with a higher risk of being physically, psychologically, and socially frail. CONCLUSIONS: Sociodemographic factors, lifestyle and multimorbidity contributed differently to the four frailty domains. It is important to consider multiple frailty domains since this helps to identify different groups of frail people, and as such to provide tailored care and support. Lifestyle factors including physical activity, smoking and sleep duration were associated with multiple domains of frailty.