Improving integrated care for older people: An exploration from a European perspective

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Tilburg University

Improving integrated care for older people

Stoop, H.J.

Publication date:

2020

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Stoop, H. J. (2020). Improving integrated care for older people: An exploration from a European perspective.

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Improving

integrated care

for older people

An exploration from a European perspective

Annerieke Stoop

o

vin

g

int

egr

at

ed car

e f

or older people

Anner

iek

e S

toop

Improving

integrated

care for older

people

An exploration from a European perspective

voor het bijwonen van de openbare verdediging van het proefschrift

welke plaatsvindt op

vrijdag

30 oktober 2020

om 10.00 uur

in de aula van Tilburg University, Cobbenhagen gebouw,

Warandelaan 2, Tilburg Annerieke Stoop h.j.stoop@uvt.nl

Paranimfen

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548318-L-bw-Stoop 548318-L-bw-Stoop 548318-L-bw-Stoop 548318-L-bw-Stoop Processed on: 18-9-2020 Processed on: 18-9-2020 Processed on: 18-9-2020

Processed on: 18-9-2020 PDF page: 1PDF page: 1PDF page: 1PDF page: 1

An exploration from a European perspective

Hendrika Johanna Stoop

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ISBN: 978-94-6421-010-1 Cover design by Bram Rietveld

Layout by Yasmin Katlich | persoonlijkproefschrift.nl Printed by Ipskamp Printing | proefschriften.net

The research for this doctoral thesis was conducted at the Centre for Nutrition, Prevention and Health Services research, Dutch National Institute for Public Health and the Environment (RIVM), and at the Department of General Practice and Elderly Care Medicine, Amsterdam UMC, location VUmc.

The research reported in Chapter 3 of this doctoral thesis was financially supported by the Dutch Ministry of Health, Welfare and Sport. The research reported in Chapters 4 to 7 of this doctoral thesis was financially supported by Horizon 2020 – the Framework Programme for Research and Innovation (2014-2020) from the European Commission under grant agreement No. 634144. The content of these chapters reflects only the authors’ views. The European Union is not liable for any use that may be made of the information contained herein.

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An exploration from a European perspective

Proefschrift ter verkrijging van de graad van doctor aan Tilburg University op gezag van de rector magnificus, prof. dr. K. Sijtsma,

in het openbaar te verdedigen

ten overstaan van een door het college voor promoties aangewezen commissie in de Aula van de Universiteit

op vrijdag 30 oktober 2020 om 10.00 uur

door

Hendrika Johanna Stoop

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Prof. dr. M.G.A.A.M. Nijpels

Copromotor

Dr. ir. S.R. de Bruin

Leden promotiecommissie

Prof. dr. H.E. van der Horst Dr. A.P.D. Jansen

Prof. dr. M.P. Rijken

Prof. dr. M.P.M.H. Rutten-van Mölken Prof. dr. J.M.G.A. Schols

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Chapter 1 General introduction 6 Chapter 2 Whom do we serve? Health and functioning of older

community care recipients in Europe

18 Chapter 3 Improving early detection initiatives: a qualitative study

exploring perspectives of older people and professionals

40 Chapter 4 The SUSTAIN project: a European study on improving

integrated care for older people living at home

80 Chapter 5 Exploring improvement plans of fourteen European

integrated care sites for older people with complex needs

104 Chapter 6 Improving person-centredness in integrated care for older people:

experiences from thirteen integrated care sites in Europe

162 Chapter 7 Comprehensive geriatric assessments in integrated care

programs for older people living at home: a scoping review

232 Chapter 8 General discussion 308

Summary 334

Nederlandse samenvatting

339

About the author 344

List of publications 345

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Processed on: 18-9-2020 PDF page: 8PDF page: 8PDF page: 8PDF page: 8 8

Getting older

Since the 19th century, Europeans are living longer and healthier lives as a result of improved personal hygiene and living conditions, sufficient food, medical advances, vaccination and other public health measures [1, 2]. Across European Union member states, life expectancy at birth was about 69 years in 1960 and raised to about 81 years in 2017 [2, 3]. At the same time, total fertility rates have declined sharply since the post-World War II baby boom [2]. As a consequence, the population structure has considerably changed in the past decades. The number of older people (i.e. people aged 65 years and older) in today’s Western society has been growing in absolute and relative numbers, and is expected to further increase in the decades to come [4].

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people with complex care needs [18]. Integrated care aims to achieve better patient and staff experiences of care, improved health and wellbeing and lower health and social care costs [26-28].

Efforts to integrate health and social care services

In addition to being a promising approach, integrated care is also considered a complex phenomenon and subject of many unanswered questions. The literature shows that underlying definitions and conceptualisations of integrated care differ considerably [29, 30]. This diversity is reflected in existing integrated care initiatives. Across Europe and beyond, several integrated care initiatives have been initiated that proactively seek to structure and coordinate care and support for older people with complex care needs living at home, centred around older people’s needs and preferences [31-35]. These initiatives have been developed in a wide range of settings and contexts and show great diversity in the types of care services they provide, the aims they pursue, the populations they serve, and their outcomes or impact on clinical and organisational level [36-39]. On the one hand, this rich and varied field of practical examples shows that integrated care initiatives have been tailored to the specific context for which they were designed. On the other hand, this heterogeneity makes it challenging to compare integrated care initiatives and their outcomes, and to exchange knowledge of what works and what does not work across different care settings and countries. As a result, integrated care initiatives are struggling how to learn from each other and to successfully implement and improve integrated care for older people in practice.

In order to support the exchange of good practices across national borders, including meaningful interpretation of lessons learned, it is important to understand about whom (i.e. older people targeted by integrated care initiatives) we are talking exactly. Yet, there is still much to learn about the characteristics of older people living at home in Europe in terms of their health and functioning, specifically regarding differences and similarities between different European populations. Also knowledge of older people’s perspectives on living independent in their own homes and their needs and preferences in relation to initiating and receiving care and support is still limited. In addition to facilitating exchange of knowledge across countries, these insights will also provide starting-points for designing and improving integrated care that is tailored to the health and social care needs and preferences of older people in Europe. Therefore, a deeper understanding of the characteristics of older people living at home in Europe in terms of their health and functioning as well as their needs and preferences for care and support is necessary.

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Furthermore, the literature shows that improvements to specific aspects of integrated care initiatives appeared to be necessary, including person-centredness, prevention-orientation, safety, efficiency and coordination of care and support [37, 40-44]. Although widely acknowledged and pursued, the further development and improvement of integrated care initiatives is considered to be a difficult task, even more because knowledge of successfully improving integrated care is limited. The specific ambitions for improving integrated care, the factors that facilitate or impede successful improvements and the eventual outcomes of improvements (which are all embedded in local contexts of integrated care initiatives) are not yet studied [45]. As a result, a general understanding of what does and does not work and with what specific outcomes when improving integrated care is lacking. To better understand how to improve integrated care, a first essential step is to gain insight into the barriers to integrated care and whether they differ across the varied field of integrated care initiatives. Also knowledge of which possible improvement areas are prioritised and possible to address considering the local contexts, as well as which improvement activities are developed in order to improve integrated care are helpful but still lacking. Therefore, more insights into what integrated care for older people looks like across different countries and care settings in Europe, including barriers to integrated care, and what ambitions integrated care initiatives have for improving their current practices need to be obtained.

Improving person-centredness in integrated care

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the decision-making process regarding their own care, and/or to manage their own health and care; 2) establishing an accommodating, cooperative and ongoing relationship between the professional, the person receiving care and the informal carer, including respectful communication and active listening; 3) having an understanding of the specific (health) concerns of the person, and their individual needs and preferences; 4) addressing all domains of health (i.e. the physical, cognitive, psychological and social health domains); and 5) providing coordinated care to achieve continuity and coherence of care and support [52].

Integrated care initiatives for older people with complex care needs has made efforts in order to organise services more comprehensively around older people’s individual needs and foster person-centred care. A prevalent intervention component within integrated care initiatives is the needs assessment, also referred to as the comprehensive geriatric assessment (CGA) [30, 40, 44, 57-60]. A CGA is performed to increase the understanding of an older person’s problems and impairments in health and functioning as well as their individual care needs, wishes and preferences in order to tailor care and support services accordingly [61]. Even though the CGA and other activities are implemented to organise services around older people’s individual needs, it remains unclear whether these further improve person-centred care [46, 47, 62, 63]. Knowledge of the range of different activities undertaken to promote person-centredness and their applicability in different integrated care contexts is limited, as well as experiences with these activities from both the service provider and service user perspective. Therefore, a better understanding of activities undertaken that aimed to promote person-centredness in the context of integrated care for older people with complex care needs as well as experiences with these activities, from multiple perspectives, is needed.

Aim and outline of this thesis

To take a step forward in the development of integrated care that is tailored to the needs and preferences of older people living at home in Europe, this doctoral thesis has the following research aims:

1. To describe the characteristics of older people living at home in Europe in terms of their health and functioning, and their needs and preferences to keep living independently at home.

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2. To explore what integrated care for older people with complex care needs looks like across different countries and care settings in Europe, and to gain insight into the ambitions of integrated care initiatives for improving integrated care delivery. 3. To provide insight into activities undertaken that aimed to promote

person-centredness in the context of integrated care for older people with complex care needs, and to explore experiences with these activities.

Several steps were taken to work towards these aims, which are covered in the following chapters (see also Table 1). Chapter 2 describes and compares problems and impairments in health and functioning of older people receiving care and support at home served across different European countries from a multidimensional approach.

Chapter 3 provides insights into older people’s needs and preferences for receiving care

and support in relation to continue living at home with problems and impairments in health and functioning. Chapter 4 describes the overall structure and approach of the Horizon 2020 research project called “SUSTAIN”, which stands for “Sustainable Tailored Integrated care for older people in Europe”. In this project, improvements to integrated care initiatives for older people living at home with complex care needs, across different countries and regions in Europe, have been designed, implemented and evaluated to gain insight into improving integrated care. Chapter 5 follows this by providing insight into the characteristics and existing ways of working of the integrated care initiatives participating in this project. This chapter also describes the plans local stakeholders of participating integrated care initiatives designed to improve existing ways of working.

Chapter 6 dives deeper into one of the main themes of the improvement plans that

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Table 1. Research aims in relation to chapters of doctoral thesis. Research aims No. of chapter Title of chapter

Aim 1 Chapter 2 Whom do we serve? Health and functioning of older community care recipients in Europe: a cross-sectional comparison

Chapter 3 Improving early detection initiatives: a qualitative study exploring perspectives of older people and professionals

Aim 2 Chapter 4 The SUSTAIN project: a European study on improving integrated care for older people living at home Chapter 5 Exploring improvement plans of fourteen European

integrated care sites for older people with complex needs

Aim 3 Chapter 6 Improving person-centredness in integrated care for older people: experiences from thirteen integrated care initiatives in Europe

Chapter 7 Comprehensive geriatric assessments in integrated care programs for older people living at home: a scoping review

Chapter 8 General discussion

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functioning of older community care

recipients in Europe

Stoop A, Lette M, Jónsson PV, Onder G, Garms-Homolová V, Declercq A, Finne-Soveri H, de Bruin SR, Baan CA, Nijpels G, van der Roest HG, van Hout HPH.

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Abstract

Introduction

Many older people across Europe stay in their homes until old age. European governments are looking for sustainable solutions to organise community care in line with older people’s needs. There is great interest in knowledge and experiences that can be shared across countries since they face similar challenges. For this, insight into the health and functioning of community care recipients in different countries is also necessary. Currently, these insights from a multidimensional perspective on health are lacking. This study therefore aims to provide a comprehensive picture of health and functioning and explore potential differences between older community care recipients across Europe.

Methods

This cross-sectional study was conducted as part of the “Identifying best practices for care-dependent elderly by Benchmarking costs and outcomes of community Care” (IBenC) project. The study included 2884 older community care recipients from six European countries. Data were collected on impairments in different health domains, using the interRAI Home Care assessment instrument.

Results

Health and functioning substantially varied across the samples of community care recipients from Belgium, Finland, Germany, Iceland, Italy and the Netherlands. Overall, the Dutch sample of community care recipients experienced the fewest impairments, whereas the highest prevalence rates of almost all impairments were found in the Italian sample. Only impairments in the social domain were least often observed among Italian community care recipients compared to the other samples.

Discussion

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Background

Across Europe, the majority of people keep living in their homes and communities until old age. As they get older, people often face multiple problems and limitations. This can affect independent living and social participation, which in turn increase their need for informal and formal care [1, 2]. Community care services are available to support older people with their health and social care needs [3, 4]. The demand for community care is expected to increase due to demographic developments, and an expected decrease in the availability of informal care. In addition, ongoing workforce shortages in the care sectors are putting pressure on community care services. European governments are therefore looking for sustainable solutions to organise community care effectively around older people’s needs [4]. Much research has been conducted on how to organise and improve community care services in European regions and countries. The exchange of experiences and lessons learned between European countries can contribute to knowledge about improving community care. To facilitate the application and adaptation of experiences and lessons learned to other European regions and countries, insight into potential differences in community care between countries is considered necessary.

Comparative studies show that characteristics of older community care recipients differ between European countries, for instance, in terms of marital status, living arrangements and the amount of informal support they receive. This variation is associated with cultural traditions, such as populations’ attitudes towards marriage and the role of informal caregivers [4, 5]. Different financing, delivery and governance of community care across Europe may play a role as well (e.g. availability of formal care) [4, 6, 7]. These differences in access to and financing of community care are also expected to result in differences in health and functioning of community care recipients across countries [6, 8].

The few available studies that explored international variation in the health and functioning of older community care recipients mostly, but not exclusively, concentrated on physical and cognitive limitations [5, 9-13]. The measures used to evaluate health and functioning often included: Activities of Daily Living (ADL) dependence, Instrumental Activities of Daily Living (IADL) dependence, falls, urinary incontinence and cognitive impairment. A broader perspective on health, which also includes other domains, such as psychological and social health, is gradually being adopted in research, policy and practice [2, 14]. This means that other aspects, such as anxiety, depressive symptoms, loneliness, and social functioning, are increasingly being included in health assessments, such as the interRAI

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HomeCare-Assessment [15]. Nevertheless, international comparative studies often do not report from this broader approach to health, which focus goes beyond addressing the individual health domains [5, 11, 13, 16]. As a result, little is known about the health and functioning of community care recipients in Europe from a multidimensional perspective. However, such insights are important, especially since for older people, a broader view on health better reflects what is important to them [2, 17, 18].

The aim of this study is, therefore, to provide a comprehensive picture of the health and functioning of older community care recipients being served by community care organisations from different European regions and countries. This will provide insight into the extent to which various domains of health and functioning differ between community care populations in Europe.

Methods

Setting and study population

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Community care recipients were eligible to participate in this study if they: 1) received community care services for at least fourteen days from an organisation that participated in the IBenC project, 2) were aged 65 years or older, 3) lived in their own homes, and 4) were expected to remain care recipient of the community care organisation for at least six months after inclusion. This means that this study specifically focused on long-term community care recipients. Community care recipients with (severe) cognitive impairments who did not have a known informal caregiver or legal representative were excluded from the study. All participating community care recipients living in the same country together represented the sample of community care recipients for that specific country (e.g. all participants living in Finland represented the Finnish sample, and all participants living in Italy represented the Italian sample).

Data collection

Data were collected among community care recipients using the interRAI HomeCare-Assessment (interRAI HC) [20]. The interRAI HC is a standardised and fully structured comprehensive geriatric assessment instrument designed to assist the care planning process for older people receiving community care services. It comprises approximately 320 items that can provide valuable information on the characteristics of older people receiving community care services. The interRAI HC includes demographic information, health and functioning, home environment, informal care, and medical diagnoses and conditions. All items from the interRAI assessments proved to have good reliability across countries and care settings [21]. The reliability and validity of the main scales that are embedded in this instrument were extensively tested in multiple national and multinational studies [22]. Validated language versions of the interRAI HC were available in all languages required for this study.

Researchers from the IBenC project approached community care recipients who fulfilled the inclusion criteria. Eligible community care recipients were informed in writing or orally about the IBenC study, and were then invited to participate. Participants provided (written) informed consent before entering the study. Trained nurses and research staff carried out interRAI HC assessments in the homes of the older community care recipients specifically for this study. In three organisations the interRAI HC was used in routine care practice (both Italian organisations and one Dutch organisation). Informed consent was not required for community care recipients that received services from one of these organisations, following local ethical regulations. After de-identification, these organisations transferred assessment data anonymously to the national study centres.

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Outcome measures

Different background characteristics of community care recipients were assessed, including age, sex, living situation, and informal care provision.

Impairments in the different health domains were assessed using one or multiple scales or items that were selected from the interRAI HC. This selection was based on outcome measures that are common in the literature on (domains of) older people’s health and functioning.

Physical health

The physical domain was represented by four impairments (or problems): ADL dependency, IADL dependency, recent falls and urinary incontinence. When community care recipients experienced at least one of these four impairments, they were categorised as an recipient with an impairment in the physical domain.

ADL and IADL dependency were evaluated with the ADL Hierarchy scale (ADLH) [23], and IADL Capacity Hierarchy scale (IADLCH) [24]. The ADLH groups four types of activities of daily living according to the stage of the disablement process in which they occur. Early loss ADL items (for example, personal hygiene) were assigned lower scores than late loss ADL items (for example, eating). The ADLH scores ranged from 0 to 6, with a higher score indicating a higher level of ADL dependence. A score of 3 or higher was an indication of ADL dependence, which means that extensive ADL support is needed.

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Cognitive health

The cognitive domain was represented by the presence of cognitive impairments, which were evaluated using the Cognitive Performance Scale (CPS) [25]. The CPS combines information on decision-making capacity, memory impairment, level of consciousness, and executive functioning. CPS scores ranged from 0 to 6, with higher scores indicating a more severe cognitive impairment. A score of 3 or higher was used to indicate the presence of cognitive impairment.

Mental health

The mental health domain was represented by the presence of symptoms of a mood disorder. Mental health was measured using the Depression Rating Scale (DRS) [26]. The DRS is used as a clinical screening tool for symptoms of a mood disorder and includes seven items, including for instance repetitive anxious complaints, persistent anger, and crying and tearfulness. DRS scores ranged from 0 to 14, with higher scores indicating more significant depressive symptoms. Scores of 3 or higher indicated minor or major depressive symptoms.

Social domain

For social functioning, three problems were considered: the presence of feelings of loneliness, limited participation in social activities and a limited social network. When community care recipients experienced at least one of these three problems, they were categorised as a recipient with an impairment in the social domain.

Loneliness was measured by a single item on whether the community care recipient indicated to feel lonely. Limited participation in social activities was measured by an item on whether the community care recipient participated in social activities of long-standing interest recently. A limited social network was assessed by an item on whether the community care recipient had visits with long-standing social relations/family recently. For limited social participation and limited social network, response options included ‘never’, ‘more than 30 days ago’, ‘8-30 days ago’, ‘4-7 days ago’, ‘in last 3 days’, and ‘unable to determine’. Community care recipients that responded with ‘never’, ‘more than 30 days ago’ or ‘8-30 days ago’ were considered as having limited participation in social activities or a limited social network.

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Frailty

In addition to the individual health domains, a comprehensive picture of community care recipients’ health and functioning across different domains was summarised in one measure of frailty. Frailty was assessed using the Frailty Index (FI) [27]. The FI is an instrument to measure levels of frailty in older populations based on the deficit accumulation approach, and contains deficits from all health domains. An FI was constructed in the interRAI HC data [28], using standard procedures as outlined by Searle et al [27]. FI scores ranged from 0 to 1, with higher scores indicating higher levels of frailty. A cutoff point of 0.25 or higher was used to indicate the presence of frailty [29].

Analysis

Means and prevalence were calculated to describe the main characteristics and health status of the study sample. To enable comparison of impairments between different samples of community care recipients, the prevalence of community care recipients suffering from each defined impairment within a country were described. Analyses were performed using Statistical Software for Social Sciences (SPSS) Version 24 for Windows.

Results

General characteristics

Data were collected from a total of 2884 older community care recipients (Table 1). The mean age of the total sample was approximately 83 years, and approximately two-thirds of the sample were female. Age and sex of community care recipients were similar across most countries, except for the Italian sample, in which the proportion of women was relatively lower. In the Belgian, Italian and Icelandic samples, an informal caregiver was almost always available, in contrast to German, Finnish or Dutch samples, where this was less often the case. In the Italian sample, community care recipients received a higher number of hours of informal care as compared to other countries.

Health and functioning

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country samples, impairments in the physical and social domains were more often observed than impairments in the mental and cognitive domains.

Table 1. Demographic characteristics of older community care recipients in Europe.

Total Belgium Finland Germany Iceland Italy The Netherlands n = 2884 n = 525 n = 456 n = 493 n = 420 n = 499 n = 491 Age in years, mean (SD) 82.9 (± 7.3) 82.4 (± 6.7) 82.9 (± 7.0) 84.2 (± 7.6) 83.7 (± 7.0) 81.9 (± 7.9) 82.5 (± 7.1) Female, n (%) 1930 (67.4) 352 (67.4) 313 (68.6) 351 (71.2) 292 (69.5) 286 (57.3) 336 (71.0) Married/in relationship, n (%) 815 (30.9) 179 (34.9) 71 (15.6) 124 (25.3) 129 (30.7) 203 (45.0) 109 (35.9) Living together*, n (%) 1214 (42.3) 263 (51.1) 87 (19.1) 134 (27.2) 164 (39.0) 417 (83.6) 149 (30.6) At least one informal caregiver present, n (%) 2453 (86.3) 482 (100.0) 379 (83.1) 292 (59.2) 417 (99.3) 496 (99.4) 387 (78.8) Informal care in hours last seven days, mean (SD) 27.1 (± 38.3) N/A 13.7 (± 31.6) 19.4 (± 32.6) 20.5 (± 34.4) 54.2 (± 40.0) 18.5 (± 33.2)

N/A: Not available; SD: standard deviation; *: Living together includes living together with spouse/ partner only, with spouse/partner and other(s), with child, with parent(s) or guardian(s), with siblings, with other relative(s) or with nonrelative(s).

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Figure 1 visualises between-country differences in the prevalence of impairments: for each impairment, the deviation from the overall sample mean in each national sample was shown. The prevalence of ADL dependence substantially differed between countries. It was highest in the Italian and Belgian samples (80.3 and 82.0%, resp.) and lowest in the Icelandic, Dutch and Finnish samples (8.3, 8.4 and 13.2%, resp.). The prevalence of IADL dependence was highest in the Italian and Belgian samples (84.0 and 81.0%, resp.) and lowest in the Dutch sample (29.7%). Urinary incontinence was also more prevalent in the Italian and Belgian samples (71.9 and 83.4%, resp.), compared to the other European samples. Compared to the other impairments, the prevalence of falls was relatively similar across the different country samples (i.e. ranging from 6.5% in the German sample to 17.0% in the Italian sample).

The prevalence of cognitive impairments was lowest in the Dutch sample (1.8%) and highest in the Italian and German samples (37.1 and 27.4%, resp.). The differences in the prevalence of depressive symptoms between samples of community care recipients were smaller (i.e. ranging from 12.1% in the Finnish sample to 25.6% in the Belgian sample). The proportion of community care recipients that reported feelings of loneliness differed across the samples, with the highest prevalence in the Dutch sample (31.2%) and the lowest prevalence in the Italian sample (8.9%). In all samples, the proportion of community care recipients with limited participation in social activities was high, with the highest prevalence found in the Italian and Icelandic samples (78.9 and 80.7%, resp.). Also differences in the prevalence of a limited social network were small between the European samples, except for the German sample which showed a relatively high prevalence (71.5%).

Multidimensionality

As an overall measure that captures all domains of health and functioning, the Frailty Index showed that the prevalence of frailty among community care recipients was high among European care recipients (Table 2). The highest frailty rates were observed in Italian, Belgian, and German samples (97.7, 94.8 and 86.8%, resp.) and the lowest rate in the Dutch sample (50.3%).

Table 3 shows the proportion of community care recipients that experienced impairments in different health domains simultaneously. Across all country samples, at least half of the community care recipients experienced impairments in two or more domains

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simultaneously (i.e. ranging from 54.1% in the Dutch sample to 87.9% in the Italian sample). Overall, the most considerable overlap was found for impairments in the physical and the social domain.

Table 3. Proportion of community care recipients that experienced impairments in multiple health domains simultaneously across six European countries.

Domains Total Belgium Finland Germany Iceland Italy The Netherlands No impairments (%) 6.1 1.6 10.5 8.1 3.6 1.2 11.4 Impairment(s) in one domain (%) 23.8 20.8 33.8 18.3 25.0 11.0 34.4 Impairment(s) in two domains (%) 43.9 47.0 40.4 38.8 52.6 46.0 39.9 Impairment(s) in three domains (%) 21.9 24.0 13.8 28.3 16.4 34.0 13.8 Impairment(s) in four domains (%) 4.3 6.5 1.5 6.5 2.4 7.9 0.4

Discussion

Main findings

This study shows that the health and functioning varied between the samples of community care recipients from the different European countries that participated in the IBenC project. Overall, the lowest prevalence rates of impairments were found in the Dutch sample. The Italian sample reflected the highest prevalence rates of almost all impairments. The only exception was feelings of loneliness, which were least often observed among the Italian sample. The majority of community care recipients that were studied experienced multiple impairments, and in two or more health domains simultaneously.

Variations among European community care recipients

To show differences and similarities in the health and functioning across Europe, previous studies often compared regions that were defined based on their physical geography. However, it is uncertain whether such comparisons make sense, since these studies came to contradictory conclusions. Some studies showed that northern and western European countries have lower prevalence rates of impairments in community care recipients

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compared to southern and eastern European countries. This was specifically the case for ADL and IADL dependency and cognitive impairments [5, 11, 30]. Other studies, however, observed a high prevalence of ADL dependency in western European countries, for instance, in Germany [5, 11]. Our study also showed relatively high prevalence rates in the southern European country Italy, as well as in the western European countries Germany and Belgium. In line with the existing literature, geographical differences were not very clear in our findings, although it should be noted that community care recipients living in eastern and southern European regions were less well represented in our study. We should, therefore, be careful in drawing conclusions based on regions defined by their physical geography.

The variation between countries is more likely to be explained by differences in accessibility and financing of community care, and in the availability of other long-term care services, such as nursing home care [6]. Across European countries, the percentages of people who receive long-term care at home differ [4, 31]. Germany and Italy have the lowest rates of people receiving long-term community care, while these countries, together with Finland, have the highest percentages of people over 65 years of age across the six observed countries [32]. In Italy and Germany, only individuals with the highest levels of care need are eligible for community care services, while, for instance, in Scandinavia and the Netherlands, also people with a relatively lower need of care are eligible for such services [4]. These eligibility criteria were reflected in the health and functioning of the Italian sample, and to a lesser extent, also in the German sample in this study. Particularly the Italian sample experienced a high number of impairments as compared to the other European samples. In addition, in Belgium and Germany, eligibility for community care is highly dependent on the level of ADL dependency [33, 34], which explains the higher prevalence of ADL dependence in these two samples.

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number of contracted immigrant workers [7, 8]. This way, older people with multiple severe impairments in health and functioning can remain living in their homes instead of moving to residential or nursing care homes. The presence of informal care networks and the restricted access to formal care services could explain why the Italian sample of community care recipients experienced the highest number of impairments compared to the samples from the other countries.

Methodological considerations

This study aimed to enhance the understanding of the health and functioning across a variety of community care contexts in Europe. We were able to measure health and functioning consistently across countries by using a uniform instrument in the form of the interRAI HC [21]. Additionally, nurses and research staff who conducted the assessments followed a standardised training on the interRAI HC, which enhanced the quality of the data.

Furthermore, we addressed the different sampling strategies that were used in this study. Most participants were enrolled in the study after an invitation to participate and provision of informed consent. However, for both Italian organisations and one Dutch organisation, the interRAI HC was an aspect of usual care, which meant that potential selection bias because of study refusal could not take place. To explore potential bias due to these different sampling strategies, we analysed differences in socio-demographic characteristics (age, sex) of the Dutch sample, because in that specific population both sampling strategies were applied. We analysed potential differences between these Dutch subpopulations with the independent t-test and chi-square test and found no statistically significant differences. This suggests that sampling bias was not an issue in this study. A limitation of this study is that we remain uncertain about the representativeness of our samples. We aimed to examine representative samples of ‘typical users’ by selecting diverse community care organisations. However, only a limited number of organisations per country were included in this study. Furthermore, in organisations where recipients were invited to participate, they likely experienced selective sampling. For example, for two Dutch organisations community care recipients were recruited using postal invitations. In these organisations, only limited numbers of persons with cognitive impairment were included since it was difficult to seek informed consent from their legal representatives. In addition, the use of postal invitations in the Netherlands could have result in acceptation to participate in this study of mainly people with less

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severe conditions, compared to other countries where people were, for instance, invited in person [39]. This may have influenced the representativeness of the Dutch sample. Nevertheless, IADL and ADL dependency prevalence rates in our German, Icelandic, Dutch, Italian, and Finnish samples closely reflect prevalence rates as previously reported in national reference data and the literature [5, 8]. For other domains of health and functioning, these data were not available.

Implications for policy and practice

Since the prevalence of (chronic) diseases, multimorbidity, and physical disabilities increases with age [40], also this study found that a high number of older people suffer from multiple problems in the physical domain of health. However, in contrast to earlier international comparative studies, this study adopted a broader approach and also assessed cognitive, mental and social domains of health and functioning. Through adopting this broader approach, we were able to show that, in addition to problems in the physical domain, the majority of older community care recipients experienced multiple impairment(s) and in two or more health domains simultaneously. Impairments in the physical domain and social domain were often observed together. Existing literature also shows that impairments in different domains are often closely associated with each other. People with urinary incontinence, for example, are more likely to be socially isolated and to experience difficulties in participating in in social activities [41], and ADL and IADL abilities are often negatively impacted by reduced cognitive functioning [42]. The simultaneous occurrence and interrelatedness of impairments across different domains imply that a comprehensive approach to care, comprising both health and social services, is necessary.

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instance, which other contextual factors are related to the observed differences in the health and functioning between different European samples.

Conclusion

This study showed that there are substantial differences in the health and functioning of community care recipients in research samples from across different European countries. These differences may be partly explained by differences in eligibility criteria for community care services. The variation between community care recipients needs to be considered when sharing experiences and lessons learned on improving community care across national borders.

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