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.

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.

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.

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.

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.

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.

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.

Improving early detection initiatives: a qualitative study exploring perspectives of older people and professionals.

BACKGROUND: A wide range of initiatives on early detection and intervention have been developed to proactively identify problems related to health and wellbeing in (frail) older people, with the aim of supporting them to live independently for as long as possible. Nevertheless, it remains unclear what the best way is to design such initiatives and how older people's needs and preferences can be best addressed. This study aimed to address this gap in the literature by exploring: 1) older people's perspectives on health and living environment in relation to living independently at home; 2) older people's needs and preferences in relation to initiating and receiving care and support; and 3) professionals' views on what would be necessary to enable the alignment of early detection initiatives with older people's own needs and preferences. METHODS: In this qualitative study, we conducted semi-structured interviews with 36 older people and 19 professionals in proactive elderly care. Data were analysed using the framework analysis method. RESULTS: From the interviews with older people important themes in relation to health and living environment emerged, such as maintaining independence, appropriate housing, social relationships, a supporting network and a sense of purpose and autonomy. Older people preferred to remain self-sufficient, and they would rather not ask for help for psychological or social problems. However, the interviews also highlighted that they were not always able or willing to anticipate future needs, which can hinder early detection or early intervention. At the same time, professionals indicated that older people tend to over-estimate their self-reliance and therefore advocated for early detection and intervention, including social and psychological issues. CONCLUSION: Older people have a broad range of needs in different domains of life. Discrepancies exist between older people and professionals with regard to their views on timing and scope of early detection initiatives. This study aimed to reveal starting-points for better alignment between initiatives and older people's needs and preferences. Such starting points may support policy makers and care professionals involved in early detection initiatives to make more informed decisions.

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.

Initiatives on early detection and intervention to proactively identify health and social problems in older people: experiences from the Netherlands.

BACKGROUND: Over the last years, several initiatives on early detection and intervention have been put in place to proactively identify health and social problems in (frail) older people. An overview of the initiatives currently available in the Netherlands is lacking, and it is unknown whether they meet the preferences and needs of older people. Therefore, the objectives of this study were threefold: 1. To identify initiatives on early detection and intervention for older people in the Netherlands and compare their characteristics; 2. To explore the experiences of professionals with these initiatives; and 3. To explore to what extent existing initiatives meet the preferences and needs of older people. METHODS: We performed a qualitative descriptive study in which we conducted semi-structured interviews with seventeen experts in preventive elderly care and three group interviews with volunteer elderly advisors. Data were analysed using the framework analysis method. RESULTS: We identified eight categories of initiatives based on the setting (e.g. general practitioner practice, hospital, municipality) in which they were offered. Initiatives differed in their aims and target groups. The utilization of peers to identify problems and risks, as was done by some initiatives, was seen as a strength. Difficulties were experienced with identifying the target group that would benefit from proactive delivery of care and support most, and with addressing prevalent issues among older people (e.g. psychosocial issues, self-reliance issues). CONCLUSION: Although there is a broad array of initiatives available, there is a discrepancy between supply and demand. Current initiatives insufficiently address needs of (frail) older people. More insight is needed in "what should be done by whom, for which target group and at what moment", in order to improve current practice in preventive elderly care.

Multimorbidity of chronic diseases and health care utilization in general practice.

BACKGROUND: Multimorbidity is common among ageing populations and it affects the demand for health services. The objective of this study was to examine the relationship between multimorbidity (i.e. the number of diseases and specific combinations of diseases) and the use of general practice services in the Dutch population of 55 years and older. METHODS: Data on diagnosed chronic diseases, contacts (including face-to-face consultations, phone contacts, and home visits), drug prescription rates, and referral rates to specialised care were derived from the Netherlands Information Network of General Practice (LINH), limited to patients whose data were available from 2006 to 2008 (N=32,583). Multimorbidity was defined as having two or more out of 28 chronic diseases. Multilevel analyses adjusted for age, gender, and clustering of patients in general practices were used to assess the association between multimorbidity and service utilization in 2008. RESULTS: Patients diagnosed with multiple chronic diseases had on average 18.3 contacts (95% CI 16.8 19.9) per year. This was significantly higher than patients with one chronic disease (11.7 contacts (10.8 12.6)) or without any (6.1 contacts (5.6 6.6)). A higher number of chronic diseases was associated with more contacts, more prescriptions, and more referrals to specialized care. However, the number of contacts per disease decreased with an increasing number of diseases; patients with a single disease had between 9 to 17 contacts a year and patients with five or more diseases had 5 or 6 contacts per disease per year. Contact rates for specific combinations of diseases were lower than what would be expected on the basis of contact rates of the separate diseases. CONCLUSION: Multimorbidity is associated with increased health care utilization in general practice, yet the increase declines per additional disease. Still, with the expected rise in multimorbidity in the coming decades more extensive health resources are required.

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.

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.

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.

Pay-for-performance in disease management: a systematic review of the literature.

BACKGROUND: Pay-for-performance (P4P) is increasingly implemented in the healthcare system to encourage improvements in healthcare quality. P4P is a payment model that rewards healthcare providers for meeting pre-established targets for delivery of healthcare services by financial incentives. Based on their performance, healthcare providers receive either additional or reduced payment. Currently, little is known about P4P schemes intending to improve delivery of chronic care through disease management. The objectives of this paper are therefore to provide an overview of P4P schemes used to stimulate delivery of chronic care through disease management and to provide insight into their effects on healthcare quality and costs. METHODS: A systematic PubMed search was performed for English language papers published between 2000 and 2010 describing P4P schemes related to the implementation of disease management. Wagner's chronic care model was used to make disease management operational. RESULTS: Eight P4P schemes were identified, introduced in the USA (n = 6), Germany (n = 1), and Australia (n = 1). Five P4P schemes were part of a larger scheme of interventions to improve quality of care, whereas three P4P schemes were solely implemented. Most financial incentives were rewards, selective, and granted on the basis of absolute performance. More variation was found in incented entities and the basis for providing incentives. Information about motivation, certainty, size, frequency, and duration of the financial incentives was generally limited. Five studies were identified that evaluated the effects of P4P on healthcare quality. Most studies showed positive effects of P4P on healthcare quality. No studies were found that evaluated the effects of P4P on healthcare costs. CONCLUSION: The number of P4P schemes to encourage disease management is limited. Hardly any information is available about the effects of such schemes on healthcare quality and costs.

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.

"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.

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.

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.