RTPC Boc overview paper (for submission to Aging and ...



Title:

Improving the mix of institutional and community care for older people with dementia: An application of the Balance of Care approach in eight European countries

Authors:

Tucker Sa, Sutcliffe Ca, Bowns Ia, Challis Da, Saks Kb, Verbeek Hc, Cabrera Ed, Karlsson Se, Leino-Kilpi Hf, Meyer Gg and Soto MEh on behalf of the RightTimePlaceCare Consortiumi

Affiliations:

a Personal Social Services Research Unit, University of Manchester, UK

b Department of Internal Medicine, University of Tartu, Estonia

c Department of Health Services Research, CAPHRI School for Public Health and Primary Care,

Maastricht University, The Netherlands

d School of Health Sciences TecnoCampus, University Pompeu Fabra, Barcelona, Spain

e Department of Health Sciences, Lund University, Sweden

f Department of Nursing Science, University of Turku, and Turku University Hospital, Finland

g Faculty of Health, School of Nursing Science, University of Witten/Herdecke, Witten, Germany;

Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Germany

h Geriatrics Department, Gerontôpole, Toulouse University Hospital, INSERM UMR 1027, France

Contact details:

Sue Tucker, sue.tucker@manchester.ac.uk, tel: 0161 275 5938

Caroline Sutcliffe, caroline.sutcliffe@manchester.ac.uk, tel: 0161 275 5227

Ian Bowns, ian.bowns@manchester.ac.uk, tel: 0161 275 5250

David Challis, david.challis@manchester.ac.uk, tel: 0161 275 5250

Kai Saks, kai.saks@kliinikum.ee, tel: +372 731 8627

Hilde Verbeek, h.verbeek@maastrichtuniversity.nl, tel: +31 43 3881513

Esther Cabrera, ecabrera@tecnocampus.cat, tel: +34 93 169 65 01

Staffan Karlsson, staffan.karlsson@med.lu.se, tel: +46 46 2221832

Helena Leino-Kilpi, helena.leino-kilpi@utu.fi, tel: +358 2 3338404

Gabriele Meyer, gabriele.meyer@medizin.uni-halle.de, tel: +49 345 557 4498

Maria E Soto, soto-martin.me@chu-toulouse.fr, tel: +33 5 617777649

iThe RightTimePlaceCare Consortium partners are as follows:

Coordinator:

University of Witten/Herdecke (DE): Gabriele Meyer, PhD, RN, scientific coordinator of the RightTimePlaceCare project; Astrid Stephan, MSc, RN; Anna Renom-Guiteras; Dirk Sauerland, PhD; Ansgar Wübker, PhD; Patrick Bremer.

Consortium Members:

Maastricht University (NL): Jan P.H. Hamers, PhD, RN; Basema Afram, MSc; Hanneke C. Beerens, MSc, RN; Michel H.C. Bleijlevens, PhD, PT; Hilde Verbeek, PhD; Sandra M.G. Zwakhalen, PhD, RN;

Dirk Ruwaard, PhD, MD; Ton Ambergen, PhD.

Lund University (SE): Ingalill Rahm Hallberg, PhD; Ulla Melin Emilsson, PhD; Staffan Karlsson, PhD; Christina Bokberg, MSc; Connie Lethin, MSc.

University of Manchester (England): David Challis, PhD; Caroline Sutcliffe, MSc; David Jolley, PhD; Sue Tucker, MSc, RMN, RGN; Ian Bowns, PhD; Brenda Roe, PhD; Alistair Burns, PhD.

University of Turku (FI): Helena Leino-Kilpi, PhD, RN; Jaana Koskenniemi, MSc, RN; Riitta Suhonen, PhD, RN; Matti Viitanen, PhD, MD; Seija Arve, PhD, RN; Minna Stolt, PhD; Maija Hupli, PhD, RN.

University of Tartu (EE): Kai Saks, PhD, MD; Ene-Margit Tiit, PhD; Jelena Leibur, MD; Katrin Raamat, MA; Angelika Armolik, MA; Teija Tuula Marjatta Toivari, MA, RN.

Fundació Privada Clínic per la Recerca Biomédica, Hospital Clínic of Barcelona (ES): Adelaida Zabalegui, PhD, RN; Esther Cabrera, PhD, RN (Escuela Superior Ciencias de la Salud TecnoCampus); Ester Risco, MSc, RN; Carme Alvira, MSc, RN; Marta Farre, MSc, RN; Susana Miguel, MSc, RN.

Gerontôpole, University of Toulouse (FR): Maria Soto, MD; Agathe Milhet; Sandrine Sourdet, MD; Sophie Gillette, PhD; Bruno Vellas, MD,PhD.

Corresponding author:

Sue Tucker, Personal Social Services Research Unit, University of Manchester, Crawford House, Booth Street East, Manchester M13 9QS

Acknowledgements:

The authors are grateful to Anna Renom-Guiteras, University of Witten/Herdecke, for her support with the costing exercise.

Funding:

This work was supported by a grant from the European Commission within the 7th Framework Programme (project 242153)

Title

Improving the mix of institutional and community care for older people with dementia: An application of the Balance of Care approach in eight European countries

Abstract

Objectives: To examine whether the mix of community and institutional long-term care (ILTC) for people with dementia (PwD) in Europe could be improved; assess the economic consequences of providing alternative services for particular groups of ILTC entrants; and explore the trans-national application of the ‘Balance of Care’ (BoC) approach.

Method: A BoC study was undertaken in Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden and the UK as part of the RightTimePlaceCare project. Drawing on information about 2,014 PwD on the margins of ILTC admission, this strategic planning framework identified people whose needs could be met in more than one setting, and compared the relative costs of the possible alternatives.

Results: The findings suggest a noteworthy minority of ILTC entrants could be more appropriately supported in the community if enhanced services were available. This would not necessarily require innovative services, but more standard care (including personal and day care), assuming quality was ensured. Potential cost savings were identified in all countries, but community care was not always cheaper than ILTC and the ability to release resources varied between nations.

Conclusions: This is believed to be the first trans-national application of the BoC approach, and demonstrates its potential to provide a consistent approach to planning across different health and social care systems. Better comparative information is needed on the number of ILTC entrants with dementia, unit costs and outcomes. Nevertheless, the findings offer important evidence on the appropriateness of current provision, and the opportunity to learn from different countries’ experience.

Keywords:

Dementia, home care, institutionalisation, resource allocation, balance of care

Introduction

A possible decline in the prevalence and incidence of dementia in developed countries has been noted (Schrijvers et al., 2012; Matthews et al., 2013; Qiu, von Strauss, Bäckman, Winblad & Fratiglioni, 2013). However, across Europe, the increasing number of older adults is predicted to result in a continued growth in the absolute number of people with dementia (PwD) over coming decades (World Health Organization & Alzheimer's Disease International, 2012; Alzheimer’s Society, 2013). The effects of this will be profound. Dementia is the single leading contributor to disability amongst older people and causes significant morbidity and mortality as well as personal and family distress, costing the European Region over €175 billion per annum (Alzheimer Europe, 2009; Prince, Prina & Guerchet, 2013). Further, declining fertility, the rising proportion of women in the workforce, dispersed family networks and changing intergenerational attitudes towards informal care are likely to lead to greater demand for formal care services (Pavolini & Ranci, 2013; Prince et al., 2013). As budgetary constraints limit opportunities for service investment, making best use of provision for PwD is a government priority (Quaglio, Karapiperis, van Woensel, Arnold & McDaid, 2013; de Waal, Lyketsos, Ames & O’Brien, 2013).

Against this backdrop, identifying the most cost-effective mix of community and institutional long-term care (ILTC) for older PwD is a major concern. Institutional facilities (variously known as nursing homes, residential homes, assisted living facilities and care homes in different countries) are an important resource in many societies. Nevertheless, ILTC is relatively costly, and most older people would prefer to ‘age in place’ (European Commission, 2008; Pavolini & Ranci, 2013). The focus on the provision of enhanced community support in many European nations is, thus, not surprising (Johri, Beland & Bergman, 2003; European Commission, 2008). However, the balance of community and institutional care varies greatly, reflecting different funding incentives, cultural norms and the extent of community service development, as well as a lack of robust evidence on the relative cost-effectiveness of community and institutional provision. Indeed, resource allocation for this client group is typically based on historical funding patterns and changing local and national priorities (European Commission, 2008; Pavolini & Ranci, 2013; Bebbington, Turvey & Janzon, 1996; Draper & Low, 2004; Goodwin & Frew, 2013).

In contrast, the ‘Balance of Care’ (BoC) approach – a long-standing strategic planning model – offers

service commissioners and providers a strategic framework for exploring the potential costs and outcomes of changes in the broad provision of community and institutional services (Mooney, 1978; Hughes & Challis, 2004). Developed as a national policy analysis tool (McDonald, Cuddeford & Beale, 1974), the approach seeks to identify those clients whose needs could be met in more than one setting (e.g. at home or in hospital) - people described as ‘on the margins of care’ - and explores the potential resource consequences of alternative options (Mooney, 1978; Hughes & Challis, 2004). A step-by-step account of the process is provided in the method section, whilst details of the underlying principles are available elsewhere (Mooney, 1978; Challis et al. 2014).

A recent systematic literature review identified over 30 applications of the BoC approach at a national, regional and local level (Tucker, Brand, Wilberforce & Challis, 2013). The majority of this work was undertaken in the British Isles, and explored the services needed by frail older people (Wager, 1972; O’Shea & Costello, 1991; Clarkson, Hughes & Challis, 2005). Other applications included studies in Italy (Tramarin, Tolley, Campostrini & de Lalla, 1997) and Canada (Williams et al., 2009), and with people with HIV/AIDS (Rizakou, Rosenhead & Reddington, 1991), learning difficulties (Challis & Shepherd, 1983) and renal impairment (Rutherford & Forte, 2003). However, only two applications addressed the needs of PwD (Kavanagh, Schneider, Knapp, Beecham & Netten, 1993; Tucker, Hughes, Burns & Challis, 2008), and none investigated the provision of care across countries.

The study reported in this paper aimed to address this gap and had four objectives:

• to examine whether the mix of residential and community services for PwD in eight European countries could be improved;

• to identify options for service reconfiguration;

• to assess the economic consequences of providing alternative forms of care for particular groups of ILTC entrants; and

• to explore the trans-national application of the BoC approach.

Method:

A BoC study was undertaken in Estonia (EE), Finland (FI), France (FR), Germany (DE), the Netherlands (NL), Spain (ES), Sweden (SE) and the United Kingdom (UK). This formed part of a European Commission 7th Framework-funded project designed to elicit best practice in the transition of older PwD from home to ILTC – the RightTimePlaceCare project (number 242153). The research employed a sequential mixed methods design grounded in the knowledge and experience of experienced practitioners and had five stages:

• identification of people with similar needs for care (‘case types’) in a dataset of PwD on the margins of home and ILTC;

• formulation of vignettes for key case types;

• identification of case types for whom experienced practitioners believed an alternative care setting would be more appropriate (‘marginal case types’) and specification of the preferred care arrangements;

• analysis of the relative costs of the current and alternative care options; and

• validation and interpretation of the results.

Identification of PwD with similar needs for care

Information about the situation, needs and service receipt of 2,014 PwD on the margins of ILTC was collected between November 2010 and January 2012 - (1,223 PwD living at home and receiving formal community services but considered by the professionals responsible for their care to be at risk of ILTC admission in the following six months; 791 PwD admitted to ILTC in the previous three months). A full description of the data collection process and sample have been published elsewhere (Verbeek et al., 2012; Beerens et al., 2014). Inclusions comprised people aged 65+ with: i/ a diagnosis of dementia; ii/ a Standardised Mini-Mental State Examination (SMMSE) score ≤24 (Folstein, Folstein & McHugh, 1975; Molloy, Alemayehu, & Roberts, 1991); and iii/ an informal carer who visited at least twice monthly. People admitted to ILTC for a time limited period only (e.g. for respite or rehabilitation) were excluded. Potential participants were recruited from at least three community care providers and ten long-term care facilities in each country, and sample sizes ranged from 157 in the UK to 304 in Finland.

The sample was divided into 72 relatively homogenous case types on the basis of five characteristics deemed likely to be important in determining the location and costs of their care: cognition, activities of daily living (ADLs), behaviour, carer burden and living situation (see Table 1) (Luppa et al., 2008; Tucker et al., 2013). Each case type was then further split in two to differentiate people still living at home from ILTC entrants.

Table 1 about here

Vignette formulation

Vignettes were formulated to exemplify:

• those case types commonly found in the home and ILTC samples (people empirically identified as on the margins of care);

• those case types predominantly populated by ILTC entrants for which there was an a priori case that care at home might offer a realistic alternative; and

• a selection of case types with relatively high need (to explore the determinants of community tenure and gain insight into experts’ decision patterns).

These were written in English by research team dementia care experts from Estonia, the Netherlands and Germany and standardised by UK experts before being translated into national languages. Each was based on a real person in the empirical dataset and took the form of a brief case history, incorporating information about the attributes used to form the case type, the PwD’s and their carer’s views on ILTC placement, and any co-morbidities. Importantly, each was written as if the person was living at home. Thus vignettes based on the ILTC sample were crafted to depict the time immediately before care home admission when diversion from long-term care might have been possible. An example vignette is given in Box 1.

Box 1 about here

Identification of marginal case types

In each country, expert practitioners from across the care continuum were invited to a two-hour researcher-led workshop at which the most appropriate ways of meeting the needs of the people depicted in the vignettes were explored using a modified nominal group approach (Bowling, 1997). At least 15 individuals were required to participate in each nation. Experts were defined as people with substantial experience in the assessment of PwD (including case managers, social workers, district nurses, geriatric team members, mental health nurses, geriatricians, neurologists and family practitioners dependent on country), and representation was sought from both community and institutional settings. Recruitment followed a snowball approach: researchers invited experts in the regions where the data on PwD was collected, who in turn invited other professionals. Further information is given in Saks et al. (2015).

Workshop participants were divided into small multidisciplinary groups of (usually) three or four, each of which was allocated a subset of pre-selected vignettes. Working first alone and then in their groups, practitioners were asked to indicate where they considered the depicted individuals would be most appropriately cared for: home, sheltered housing, a residential home or a nursing home using a common taxonomy agreed in an earlier stage of the project. Where the collective decision favoured care at home or sheltered housing, groups then specified the packages of support (type, volume, frequency) necessary to enable the individual to remain within the community. For the purpose of this exercise, participants were asked to put aside current constraints in service provision and be creative, whilst realistic in remembering that all services inevitably have funding implications. To help with this exercise, practitioners were given a list of services available across the participating countries (Hallberg et al., 2013). Finally, participants engaged in group discussions exploring the resource shortfalls and choices encountered in real life.

Cost analysis

The weekly costs of the community care packages proposed by the experts were estimated, and compared with the costs of ILTC placement. A public sector perspective was employed, covering the most important (expensive or commonly incurred) health and social care costs. Wherever possible, this drew on country-specific costs developed as an earlier part of the research programme. Gaps were filled with information from a recent UK BoC study (Challis et al., 2014) and other publicly available sources (Curtis, 2010), and costs were adjusted for differences in international labour costs and inflation (Wübker et al., 2014). All costs related to the 2010/11 financial year.

Drawing on information about the likely annual prevalence of ILTC placement in different countries, the potential annual savings that could be achieved by providing community care for those case types identified as having the most potential for diversion from ILTC were then estimated. Sensitivity analyses were used to explore the impact of changing several structural aspects of the model, including the proportion of people in each case type that could be cared for in the community and the length of time for which this proved possible.

Validation and interpretation of results

Members of the RightTimePlaceCare’s Steering Committee and Advisory Group attended a focus group at which the validity, veracity and viability of the preliminary findings were explored.

Ethics

Appropriate research ethics approvals for the service user data collections and practitioner work groups were obtained in each country.

Results

Case type distribution

Of 144 case types used to categorise the sample, 115 (80%) were populated. Together these represented 81 per cent of the full sample: 85 per cent of people at home (n=1,035) and 77 per cent of ILTC entrants (n=606). Vignettes were compiled for 14 case types: eight based on the home care sample and six based on the ILTC sample. The latter form the focus of this paper and constituted:

• three case types (29, 31 and 35) with medium cognitive impairment and medium or high ADL-dependency but low challenging behaviour (profiles also prevalent in the home care sample);

• a further case type (33) with similar needs, for whom care at home was considered a realistic possibility; and

• two case types (57 and 60) with high cognitive impairment and high ADL-dependency (Table 2).

Together these represented approaching half the ILTC sample captured by the case typology (Table 3).

Tables 2 and 3 about here

Care-planning workshops

One hundred and sixty two people participated in the care-planning workshops, ranging from 16 in Estonia to 27 in Finland. Nurses were the most frequently represented professional group, whilst social workers also participated in every country, and doctors in all except Sweden and the UK. More than two-thirds of participants in Estonia and France worked in hospital/institutional settings; the majority elsewhere worked in the community.

Table 4 details the multidisciplinary groups’ views on the most appropriate settings in which to support each case type. Forty-five groups participated in this exercise: five in Estonia, Finland, France, Germany and Sweden, six in the Netherlands and Spain, and eight in England. At least 19 groups (minimum two per nation) considered each vignette.

Table 4 about here

Considerable variation was found within and between countries. Focusing simply on the distinction between community (home or sheltered housing) and institutional (residential or nursing home) care, participants in Estonia had the most consistent views on placement. Indeed the Estonian groups fully agreed about the most appropriate setting in which to support all six case types. In contrast, at least one group in Spain recommended community placement whilst another recommended ILTC for five of the six case types.

Groups in the Netherlands, Estonia and (to a lesser extent) France were more likely to recommend ILTC than those in other countries. Nevertheless, there was broad consensus that care at home was the most appropriate option for case type 35. The majority of groups in every country except France and the Netherlands also proposed supporting case type 29 in the community, whilst there were mixed views about the relative merits of community and ILTC for case types 31 and 33. As hypothesised, case types 57 and 60 were generally deemed appropriate for ILTC and were not included in subsequent cost analyses.

Sixty-one different care packages were formulated for the four case types for whom community care was deemed appropriate (the ‘marginal case types’), ranging from four in the Netherlands to 14 in the UK dependent on the number of participating groups and the number of case types identified as marginal in each country. Across all countries, the most commonly employed services were help with ADLs (including dressing, bathing and toileting), help with instrumental ADLs (including laundry and finances) and day care (particularly specialist facilities for PwD). Reimbursement for informal caregivers was also frequently proposed in Estonia, Spain, Germany and Finland, whilst the provision of meals and community nursing input (general and specialist dementia) featured regularly in certain countries. Aids and equipment (such as telecare and dosette boxes) and a range of other professional inputs (including family practitioners, physiotherapists and speech therapists) were also employed.

Expert participants commonly agreed that gaps in availability of community services limited the potential to support PwD in their own homes, albeit the nature and extent of shortfalls varied. Whereas those in Estonia described a general lack of home care services, those in Germany, Sweden and the UK were concerned by the limited amount of resources available at weekends and night, and those in the Netherlands by the lack of social support between visits. Again, UK participants perceived day care generally to be inadequate, whilst Swedish experts identified a specific lack of day care for people with comorbid physical and mental health problems.

Concerns about gaps in services were exacerbated by reports of inflexible service provision, a criticism made of home care services in Sweden and Germany, and transport for day care in the UK. Other significant challenges included a lack of care co-ordination (Germany and Estonia); narrow social networks (Estonia); the provision of care in rural settings (Germany); the need for greater continuity of care (Sweden); and a lack of competence amongst staff working with PwD (Sweden, the UK and Germany). Concerns about funding (current and future) were also expressed, particularly in Estonia and Germany, whilst Spanish experts highlighted a lack of options for people unable to purchase services privately.

Cost comparisons

Some of the proposed community packages were considerably more expensive than others, both within and between case types and countries, dependent on the services used and their relative unit costs (Table 5). Thus, the cheapest care package for case type 29 in Estonia cost €123 per week, compared with the most expensive in Spain and Germany at €936 per week. The costs of the four UK proposals for this case type ranged from €261 to €417 per week.

Table 5 about here

The majority of the alternative care packages proposed for all four marginal case types were less expensive than nursing home care. However, this was not necessarily true of comparisons with the cost of residential home care. Twelve of the 15 community packages suggested for case type 33 cost less than residential placement, compared with about half for case types 31 and 35 (6/11 and 10/20 respectively), and fewer than half for case type 29 (6/15). Only one of four proposals in the Netherlands, and one of six in France were less costly than residential care.

The maximum aggregate annual savings that might be achieved by diverting the marginal case types are shown in Table 6, assuming they were originally supported in residential homes (a more conservative assumption). The key factors in these calculations are the number of PwD in the case types for whom a potentially cost-saving community care package (population related) was proposed, and the maximum sum that might be saved for every individual diverted from ILTC care over a 12-month period, based on the least expensive viable alternative care package. Hence, although in Spain the maximum potential saving from supporting an individual in case type 33 in the community was greater than that from diverting someone in case type 35, because the latter represented a larger number of service users, the aggregate cost implications were greater.

As can be seen, the maximum total potential for cost savings varied markedly between countries (from €52,000 in Estonia to €121,000,000 in the UK), as did the relative aggregate saving to be made from diverting particular case types. The biggest potential gain in Germany, Finland, France and Sweden appeared to come from diverting case type 33. However, service planners in Estonia, Spain and the Netherlands might want to focus on diverting people in case type 35, and UK planners on case type 29.

Table 6 about here

Given the fluctuating needs of the study population, it is of course unlikely that, even with the benefit of enhanced services, it would be possible to maintain 100 per cent of these people in the community for a full year. In light of this, Table 7 estimates the sensitivity effect on total costs of diverting those case types for whom potentially cost-saving community care packages were proposed for a third, a half and two-thirds of a year. These figures also act as proxy indicators of the effects of diverting a third, a half and two-thirds of people in each case type for 12 months, and indicate that even a moderate diversion success rate could potentially release significant monies for reinvestment in community care in some countries.

Table 7 about here

Validation and interpretation of results

Members of the RightTimePlaceCare Steering Committee and Advisory Group identified four factors as particularly important in determining who could be diverted from care home placement: costs/finances; individual circumstances/care needs; informal care availability; and formal care availability. With regard to the latter, the group suggested the proposed alternative care packages may have been constrained by practitioners’ experience of resource limitations ‘on the ground’ and re-iterated the need for care co-ordination to create effective care packages.

Discussion

This study is believed to be the first trans-national application of the BoC approach and found that whilst the promotion of community care in Europe dates back more than twenty years (Pavolini & Ranci, 2013), there remains a widespread belief that if enhanced community services were available, a significant minority of older PwD admitted to ILTC could be more appropriately supported in their own homes. However, the proposed community care arrangements were not always cost-saving, and the ability to release such resources varied between nations.

Perceptions of marginality

A key strength of BoC studies is their ability to provide information about those client groups likely to be affected by changes in the relative supply of different forms of care (Tucker et al., 2013). Hence, this study suggests that initiatives to divert PwD from ILTC might profitably focus on individuals with medium or high levels of cognitive and ADL dependency in all eight countries, whilst people with even medium levels of challenging behaviour are not likely to be seen as suitable for community support. If this points to a degree of international consensus regarding the use of community and institutional care, setting aside issues of cost-effectiveness, experts commonly endorsed the diversion of just one case type, with views on three others more mixed. Moreover, no clear hierarchy emerged in terms of these case types’ potential for community care, suggesting the existence of systematic differences in professionals’ perceptions across Europe. Further research is underway to explore the relative weight attributable to profession, setting and country. However, it is likely that a complex mixture of factors were influential, with staff in countries with, say, a poor supply of community services (e.g. Estonia) or a strong tradition of institutional care (e.g. France and the Netherlands) less likely to favour community placement for particular case types dependent upon their specific characteristics and situation. Differences in the configuration, roles and expectations of formal and informal care, and associated funding arrangements will also have shaped participants’ views (Rostgaard et al., 2012). Indeed, structures, assumptions and incentives to support informal caregivers vary greatly across Europe, and inter-country differences have been found in the reasons for institutionalisation given by informal carers of PwD (Afram et al., 2014; Stephan et al., 2014).

The potential for cost savings

Although the study identified the potential for significant cost savings from ILTC diversion (at least in certain nations), it must be remembered that the figures represent maximum estimated savings assuming people would otherwise be supported in residential care. A small number of care packages with particularly low service inputs (and hence costs) were perceived as unduly optimistic and excluded from the modelling. However, in reality other care packages may also have needed enhancement. Furthermore, given that capacity cannot always be reduced or increased in a linear fashion, existing and substitute services may need to run in parallel in the short to medium-term, raising costs, whilst no account was taken of the transitional costs of reallocating resources between care settings and/or providers (Bosanquet, May & Johnson, 1998; Eddama & Coast, 2008). On the other hand, at least some of the individuals represented by these case types were actually admitted to (more expensive) nursing home facilities, thereby increasing the saving potential.

Although we have not quantified their respective contribution, several factors will have contributed to the estimated potential savings. These include the different case types practitioners in each country perceived as appropriate for diversion; national population sizes and age structures; the distribution of national samples across case types; and the relative costs of nations’ community and institutional services. Thus, savings appeared more limited in Estonia as only one case type was deemed genuinely marginal (community care was considered both more appropriate and cost-effective), and the estimated number of cases in that case type was comparatively small, even for the overall population.

The services needed to shift the balance of care

The study suggests that, targeted appropriately, the greater availability of what might be considered ‘standard services’ (e.g. help with ADLs and day care) could moderate demand for ILTC, albeit given the complexity of needs of PwD on the margins of ILTC, all aspects of care quality (including continuity and reliability) would need to be assured. However, whilst much use was made of generic home care services, most of the recommended day care was dementia-specific - a resource not widely available in certain countries. Further, given that the BoC approach captures average provision, in reality there is likely to be a need for a wider spread of resources in response to individuals’ situations and preferences.

Although there was a fair degree of consistency regarding the nature of the services recommended in different countries, there was considerable variability in the volume of resources proposed, both within and between countries. Such differences in turn accounted for much of the variation in costs. As suggested earlier, some practitioners may have had problems thinking beyond current service norms, indicating how countries can get ‘locked in’ to existing service patterns (Forte, 1997). For example, none of the groups in Estonia, France, Sweden or the Netherlands identified supported housing as the preferred option for any case type, yet this was recommended by several UK groups where a range of very sheltered accommodation is being developed as an alternative to ILTC (Croucher, Hicks & Jackson, 2006; Netten, Darton, Bäumker & Callaghan, 2011). Indeed, the opportunity to consider such differences is a key strength of trans-national studies, challenging people to think beyond the assumptive worlds which provide the framework and context for domestic decision-making (Rosenberg, 1985).

The need for better care co-ordination

Increasing community care capacity without enhancing care co-ordination was considered unlikely to mitigate the need for ILTC. This echoes the findings of a series of Canadian BoC studies which noted that it was often difficult for older people to manage the services they required, and that when multiple services from different providers were required, individuals and caregivers faced insurmountable challenges (Williams et al., 2009; Williams & Watkins, 2009; Kuluski, Williams, Berta & Laporte, 2012). It is then perhaps not surprising that case management has been highlighted as a best practice intervention for PwD (Zabalegui et al., 2014; Reilly et al., 2015), whilst a recent review found statistically significant benefits were most common where care management was targeted on people with complex health and social care needs (Somme et al., 2012). This would include people on the margins of ILTC placement.

Methodological considerations

In light of the previous absence of trans-national applications of the BoC, this study explored the potential of the approach to provide a consistent approach to planning across different health and social care systems. This is not an easy task, and a number of assumptions were, inevitably, built into the work. Perhaps the most significant was that the samples of cases on the margins of ILTC were representative of the wider population in that situation, when, given that the study was conducted in a small number of localities in each country, there will have been the potential for bias. Further, whilst those individuals captured by the case typology (i.e. people for whom information was available on all five key variables) were assumed to be representative of those who were not, this may not have been the case.

Ideally, the study would have employed robust evidence on the relative effectiveness of different service options for PwD in determining appropriate care arrangements, but this was not available. Hence judgements of the most alternative care options were made by experienced staff. Clearly it is possible that alternative stakeholders, including clients and carers, would have had different perspectives. Whilst most people would agree that, wherever possible, users’ views should take precedence at the individual planning level (Joseph Rowntree Foundation, 2012), nearly all BoC studies have based their models on some combination of local practitioners’/planners’/ commissioners’ judgements on the grounds that they are most in touch with operational realities at a service planning level. Assuming professionals attempt to serve clients’ best interests, users’ perspectives are, of course, implicitly considered in such analyses (Tramarin et al., 1997). However, at least two UK BoC studies explicitly asked service users and carers to review staff’s plans to ensure they were acceptable (Tucker et al. 2005, 2008; Challis et al., 2013), and future trans-national studies may wish to consider this approach.

Although a comprehensive costing approach would have been desirable, in the light of the difficulty of obtaining comparative unit costs, this analysis took a public sector costing perspective. The overall costs from a societal perspective (including the considerable costs borne by individuals and their carers) would undoubtedly have been more neutral. Asking people to specify care packages without a budget constraint was also, arguably, artificial, but this was a deliberately conservative decision to ensure potential savings were not overestimated by such limits. Likewise, in asking groups (rather than individuals) to specify alternative care arrangements, the results are more likely to under, rather than over-estimate the potential for change, as experience has shown participants in such exercises tend to tend to ‘bargain up’ in order to reach agreement (Williams et al., 2009).

Other cost considerations include the fact that whilst the costs of ILTC included hotel costs, similar estimates were not available for the community care costings on a trans-national basis. Similarly, despite efforts to allow for different labour costs across countries, there remained a degree of uncertainty about relative unit costs as input mix at given levels was not homogeneous (Wübker et al., 2014). The existence of different definitions of ILTC in national bed number estimates may also have introduced error into the aggregate calculations. However, the focus of the analysis was not on identifying precise cost totals, but cost differences.

Finally, it should be noted that the results do not necessarily imply that current placement decisions are incorrect. Rather, the study attempted to identify the potential for alternatives given better service provision. The use of vignettes can never give a full sense of the complex and difficult decisions faced in reality. Nevertheless, every attempt was made to capture the key drivers of ILTC placement, whilst such simulation allowed experienced professionals to challenge and renegotiate ‘real world’ conventions, structures and policies (Harvey & McMahon, 2008). Attention should also be drawn to the emphasis placed by the BoC approach on meeting people’s needs (as opposed to service structures), for whilst care systems, funding and principles differ between countries, people’s needs are much the same (Forte & Bowen, 2005).

Conclusions

Although there are a number of reasons to treat this study’s findings with caution, this work has taken a first step towards demonstrating the potential of the BoC framework to provide a broadly consistent approach to collecting, categorising and analysing valuable data on the characteristics of older PwD at the margins of ILTC across differing health and social care systems, permitting comparative analysis of the potential to divert such individuals from ILTC. Indeed, the approach has provided some important evidence about the appropriateness of current provision where policy makers and planners previously lacked all but the most rudimentary information, and suggests that a significant minority of ILTC entrants could be more appropriately supported in the community if enhanced services were available. This would only be cost-effective for certain case types, however, and at least in some countries, service planners seeking to support a higher proportion of care home entrants in their own homes may have to invest significantly in community services. The increasing number of European initiatives focused on improving the care of older PwD demonstrates the importance of this issue, but better comparative data on the number of PwD admitted to ILTC, unit costs and care outcomes are needed to inform future studies (European Commission, 2008).

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Table 1: Criteria and categorisation of case types

|Dimension |Measure |Categories |Definition |

|Cognition |Standardised Mini Mental State |Low impairment |SMMSE score 20 – 25 |

| |Examination* | | |

| | |Medium impairment |SMMSE score 10 – 19 |

| | |High impairment |SMMSE score 0 – 9 |

|Activities of |Katz index** |Low impairment |Katz score 6 (i.e. independent in ADL) |

|daily living | | | |

|(ADL) | | | |

| | |Medium impairment |Katz score 3-5 (i.e. mostly dependent in bathing and dressing, but |

| | | |independent in eating) |

| | |High impairment |Katz score 0-2 (highly dependent in all ADL) |

|Behaviour |NeuroPsychiatric Inventory |Low impairment |NPI < 13 |

| |Questionnaire*** | | |

| | |High impairment |NPI ≥ 13 |

|Caregiver burden|Zarit Burden Score **** |Low burden |Zarit score < 46 |

| | | |Zarit score ≥ 46 |

| | |High burden | |

|Living situation| |Lived alone | |

| | |Lived with others | |

|Residence of | |Home care | |

|sample | | | |

| | |ILTC | |

* Folstein, Folstein & McHugh, 1975; Molloy, Alemayehu, & Roberts, 1991

** Katz, Ford, Moskowitz, Jackson & Jaffe, 1963

*** Kaufer et al., 2000

**** Zarit, Reever, & Bach-Peterson, 1980

Box 1. Example of vignette

| |

|Case type: Mrs. N |

| |

|Home situation: Mrs. N is a 78 year old lady who has never married. Until a year ago she had her own small farm in the country, but she now lives |

|alone in an apartment in a small village. Although she tries to look after this herself, her social work report notes environmental concerns. |

|Activities of daily living: Mrs. N can walk a short distance independently if she pauses frequently, but needs help with stairs and a wheelchair when|

|outdoors. She is continent, can wash herself and dress her upper body, but needs prompting to care for her personal hygiene which is described as |

|poor. Although Mrs. N can feed herself, she is a messy eater, spreading crumbs across the table and floor and (on occasion) knocking over drinks. |

|She sleeps well at night and has two or three naps in the day. |

|Physical health: Mrs. N is an insulin-controlled diabetic and has poor vision. Unless she is reminded, she forgets to wear her glasses. She also |

|suffers with heart failure, has difficulty breathing and quickly becomes tired. |

|Mental health: Mrs. N was diagnosed with mild dementia (not specified) three years ago, now moderate in degree. Her short-term memory and |

|concentration are both impaired and she recently had a minor fire in her apartment when she forgot about a pan on the cooker. She is sometimes |

|disorientated to place, thinking she still lives in her farm and worrying about taking care of the animals, but is easily reassured. She also has |

|problems remembering new people’s names, but usually recognizes people she knows. Indeed, she is a generally friendly person, who likes company and |

|tries to follow professionals’ advice. |

|Informal support: Mrs. N has no close relatives and her friends do not visit very often. However, a member of the local church (of which she is a |

|member) visits a least once a week and a neighbour does her shopping and administers her insulin. |

|Attitude towards future care: Mrs. N tends to think that it is too early for her to move into a care home and that she could stay at home, although |

|she would accept a move if that was felt necessary. |

Table 2: The characteristics of the six ILTC vignettes

|Case |Cognitive |ADL |Challenging |Living |Carer |Attitude to ILTC placement | |

|type |impairment |dependency |behaviour |situation |burden | | |

|31 |Medium |Medium |Low |Not alone |Low |Negative |Negative |

|33 |Medium |High |Low |Alone |Low |Negative |Not known |

|35 |Medium |High |Low |Not alone |Low |Negative |Negative |

|57 |High |High |Low |Alone |Low |

|EE |

|ES |

|DE |

|FI |31 |3.8 |(88) |4,630 |407 |9,420 |

| |33 |21.7 |(502) |16,500 |8,290 | |

| |35 |8.5 |(197) |3,640 |717 | |

| |

|FR |33 |15.8 |(9,861) |8,010 |79,000 |79,000 |

| |

|NL |35 |9.8 |(2,038) |2,650 |5,400 |5,400 |

| |

|SE |29 |15.7 |(1,246) |5,360 |6,680 |23,700 |

| |31 |10.0 |(794) |4,160 |3,300 | |

| |33 |17.1 |(1,357) |8,680 |11,800 | |

| |35 |10.0 |(794) |2,440 |1,940 | |

| |

|UK |29 |12.5 |(5,033) |11,700 |58,900 |121,000 |

| |31 |3.6 |(1,449) |520 |754 | |

| |33 |7.1 |(2,859) |15,000 |42,900 | |

| |35 |3.6 |(1,449) |12,700 |18,400 | |

| |

Table 7: Sensitivity of aggregate annual savings to length of successful diversion from residential home care (€, M)

Average number of weeks diverted |EE |ES |DE |FI |FR |NL |SE |UK | |17 |0.02 |28.07 |31.80 |3.14 |26.33 |1.80 |7.90 |40.33 | |26 |0.03 |42.10 |47.70 |4.71 |39.50 |2.70 |11.85 |60.50 | |34 |0.04 |56.1384 |63.60 |6.28 |52.67 |3.60 |15.80 |80.67 | |52 |0.0587 |.2 |95.4 |9.42 |79.0 |5.40 |23.7 |121 | |

Rostgaard, T, Timonen, V. and Glendinning, C. (2012) Reforming Home Care in Ageing Societies, Health & Social Care in the Community, 20, 225–227

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