Challenges

Despite pronounced differences between national systems and contexts, countries across the globe face common challenges regarding delivering long-term care.

The first challenge is that countries are undergoing demographic and epidemiological changes, including accelerated population ageing and the growing prevalence of chronic conditions, multimorbidity and functional limitations that increase considerably with age. This can translate into an ever-growing share of the population that now and in the future requires support and care to maintain functionality and a high quality of life, with limited evidence that morbidity is compressed at the end of life as life expectancy increases. The proportion of older individuals needing long-term care has continued to grow in the last two decades (Costa-Font & Raut, Reference Costa-Font and Raut2022). Almost all Western European countries as well as India, Ghana and the Russian Federation amongst others showed an increasing trend in terms of long-term care needs measured in numbers of people requiring assistance for IADLs that facilitate their independent living. To meet these demands, countries are working towards strengthening their long-term care systems across all delivery settings, both in care facilities, at home and in communities, ensuring service design and people-centredness, and boosting capacities to respond to evolving care needs (European Commission, 2019; UNESCAP, 2022).

The second challenge is that the ageing trend in both developed and developing countries is expected to increase the demand for both formal and informal care. Long-term care relies heavily on informal carers and while their numbers are declining, informal carers still provide the largest portion of long-term care (Costa-Font & Raut, Reference Costa-Font and Raut2022). Formal care is often provided by a range of paid health professionals as either residential care (nursing homes, special housing, assisted living communities, day centres, etc.) or as home care. Informal care, on the other hand, is often provided within the context of a social relationship (close relatives or neighbours) and generally without pay (WHO, 2022a). Informal care can be provided in the user’s home and, in many cases, in residential care settings. In many contexts, long-term care is provided as a mix of informal and formal care, and not only one or the other. Even in countries where long-term care systems are well-developed and the service packages are rather generous (e.g., Denmark, Netherlands, Sweden), informal care always has and still accounts for the majority of care provided (European Commission, 2021b; European Commission, 2021a). In addition, changes in family patterns, such as a growing number of single households, increasing participation of women in the labour market and generally more labour mobility, will likely result in declining availability of informal carers and increase the demand for available formal long-term care providers (Spasova, et al., Reference Spasova, Baeten, Coster, Ghailani, Peña-Casas and Vanhercke2018). Adding to this, the attractiveness of the formal care sector for potential workers is undermined by several negative perceptions linked to poor and strenuous working conditions (both physical and mental) and inadequate pay (Eurofound, 2020; European Commission, 2021a; European Commission, 2021b).

A third major challenge, also addressed in chapter 2, is the persistent shortage of health professionals and a workforce with the proper skill mix. WHO has estimated that there will be a global shortfall of ten million health workers by 2030, with more profound decreases in low- and lower middle-income countries and across all health professions (WHO, 2022b). This can severely impact the successful implementation of long-term care policies and the provision and quality of care. As countries are looking for ways to reconfigure the delivery of formal long-term care services, they need to address how to: 1) increase the numbers of formal health professionals and informal caregivers, 2) retain the existing workforce, 3) improve working conditions, and 4) ensure the proper support for informal caregivers. Furthermore, having a long-term care workforce with the size and skills needed to meet the increasing demand for long-term care is a challenging task because of the many and often interrelated factors at play. Such factors include the population’s demographic characteristics, economic growth, technology, migration of long-term care professionals, education/training, and retirement policies (Grubanov-Boskovic, et al., Reference Grubanov-Boskovic, Ghio, Goujon, Kalantaryan, Belmonte and Scipioni2021). This implies a need for a holistic approach to workforce planning that integrates and coordinates different policy areas at local, national and international levels (Grubanov-Boskovic, et al., Reference Grubanov-Boskovic, Ghio, Goujon, Kalantaryan, Belmonte and Scipioni2021). These complex and often interrelated demand and supply-side factors translate into rising numbers of people requiring and looking for long-term care services, while the number of people providing these services is not rising commensurately but is rather stagnating or even declining. This leads to a growing imbalance between the supply and demand for long-term care services.

Trends

Countries around the globe are grappling with the challenges of ageing, increased demand and workforce shortages to varying degrees. Consequently, countries have been promoting new care delivery models to tackle these, and specific trends have emerged. The most prevalent are presented below.

Germany: The introduction of long-term care insurance paved the way for privatisation of services and more recent strengthening of long-term care services integration

Long-term care in Germany is provided within the institutional framework of long-term care insurance. This form of insurance was introduced as the fifth pillar of the social security system in Germany in 1994–5 and runs parallel to the health care system, following the same principles in terms of population coverage, access and choice but with substantially higher cost sharing. Long-term care insurance in Germany is funded by mandatory contributions deducted from the salaries of all employees in the country (currently 3.05–3.4% of annual salary). In 2018, 72.8 million (87.7%) of Germany’s population was covered by mandatory social long-term care insurance and about 9.2 million (11.1%) by mandatory private insurance (Blümel, et al., Reference Blümel, Spranger, Achstetter, Maresso and Busse2020). Statutory and private insurance do not differ in coverage, which under both schemes is limited to a portion of long-term costs, with the rest being paid OOP by beneficiaries and families (WHO, 2020a).

The Federal Ministry of Health, specifically the Department of Long-Term Care, bears the main responsibility for governance of long-term care. Local authorities also contribute to long-term care financing in their role of funders providing social assistance by covering high cost sharing (in particular co-payment for board and lodging in residential care) for families that cannot afford these payments. The role of local authorities is being reinforced through the promotion of neighbourhood development (Quartiersentwicklung) and the allocation of care counselling to municipalities. Overall, there is growing interest in improving counselling for people in need of care and their caregivers, in particular by enhancing the coordination of health services and long-term care and by strengthening the role of local authorities (WHO, 2020a).

Eligibility for long-term care in Germany had been traditionally limited to people with ‘restricted competencies in daily life’. Following the advice of an expert committee in 2013 to expand this definition to better reflect the needs of an increasingly ageing population, this was modified to those ‘with health-related impairments of their independence or abilities and therefore requiring help from others’ (WHO, 2020a:23). As a result of new legislation following this, the three previously defined levels of care needs were replaced by five care grades based on physical, mental and physiological disabilities, paying more attention to retaining autonomy while considering mental disabilities (WHO, 2020a). Following a long-term care needs assessment, beneficiaries can choose among cash benefits, benefits in kind and residential care. They can also choose providers. Needs are generally assessed after an acute episode requiring hospitalisation, and often hospitals include the needs assessment within the management of the patient discharge.

In principle, home care is given priority over residential care, i.e. people are cared for at home as much as possible, notwithstanding their individual right to choose between home care and residential care. Eligible beneficiaries can apply to receive care in a nursing home, which often also offer short-term care, day or night care, as well as respite services for informal caregivers. Beneficiaries who forgo cash benefits and opt for in-kind benefits at their home can receive care provided by ambulatory care providers. Services include nursing and social services, ranging from assistance with household activities to curative care services prescribed by physicians (Federal Ministry of Health, 2020). Beneficiaries may also request additional services such as day care or short-term care. In order to be eligible for service provision, providers have to obtain a utility supply contract with the long-term care insurance fund, based on compliance with staffing, training and various other regulations. Some support is available for caregivers as well (see Box 4.2).

Through the introduction of long-term care insurance in 1994–5, the infrastructure for long-term care delivery changed notably. The previously prevailing provider structure of large not-for-profit organisations was reorganised through a deliberate reliance on private investments in long-term care, which was considered essential to extend supply structures in Germany. This reorganisation led to a marketisation trend and the emergence of new for-profit and not-for-profit providers on the long-term care market, while the number of public service providers decreased considerably, affecting competition, coordination of long-term care services and users’ choice (Glendinning & Moran, Reference Glendinning and Moran2009; WHO, 2020a; Leichsenring et al., Reference Leichsenring, Rodrigues, Winkelmann and Falk2015). Several small providers of home care have been founded in urban areas; both family businesses and large investors boosted the share of private for-profit providers in residential care from 50.9% in 1999 to 65.4% in 2015 (WHO, 2020a).

The Long-Term Care Further Development Act in 2008 gave room for long-term care insurance to establish integrated care arrangements with care providers and other contracting partners, such as family doctors. These integrated care contracts are aligned between health insurers and care providers, as regards service provision and reimbursement for providers (Leichsenring et al., Reference Leichsenring, Rodrigues, Winkelmann and Falk2015). The financial incentives built into the long-term care insurance model are one of the most powerful tools promoting integration and innovation (WHO, 2022a). Disease management and integrated care initiatives were established at the local level from 2002 onward to improve the quality of care, contain costs and promote coordination and self-management, with considerable uptake.

Multidisciplinary practices with family doctors and specialists aimed at facilitating care integration have also become increasingly common, especially in rural settings. Arrangements often either take the form of family doctors as care providers, referring beneficiaries to specialists within the network, or family doctors facilitating communication with ambulatory care after a patient is discharged from hospital (WHO, 2020). In another example, local advisory centres for long-term care (Pflegestützpunkte) funded by long-term care insurance exist to facilitate coordination across local service providers and services and to provide counselling for people with care needs (WHO, 2022a).

There are important challenges, however. First, the delivery of health and social services is still considered fragmented and poorly coordinated in Germany (WHO, 2020). Major weaknesses include limited information exchange and communication among providers, poor collaboration with other sectors, as well as family doctors not being informed adequately or in a timely fashion about their patients’ discharge from hospital care. There are no care pathways or discharge plans for people in need of long-term care. To fill the gap of fragmented service delivery, unpaid caregivers often take on an additional and burdensome role as care coordinators for which they may be ill-equipped. In addition, care integration is often hampered by provider payment mechanisms that result in competition to attract patients. Also, the fact that health care insurance covers the total costs of interventions, while long-term care insurance provides only partial financial coverage, adds to a set-up where insurers and providers have limited incentives to better align delivery services (WHO, 2020).

Second, Germany’s long-term care system is faced with an inadequate supply of trained workers. While most long-term care is still provided at home by unpaid caregivers such as spouses, partners or adult children, a professionalisation process has taken place with 355,000 people working in home care and 730,100 practitioners in residential care in 2015 (WHO, 2020). Nevertheless, the increased demand for qualified personnel is becoming noticeable, especially in rural regions. In recent years, various training, qualification and compensation interventions at both the federal and regional levels have been implemented to attempt to improve the situation. However, despite these endeavours, there are concerns related to quantity and quality of the future workforce in long-term care in Germany (WHO, 2020).

Japan: A strong focus on community-based integrated long-term care services while building up disability prevention and home care capacity

Japan is the country with the oldest population in the world. People aged 65 years or older accounted for 30 per cent of the total population in 2023 depending on whether the updated data in Table 4.1 is incorporated (see Table 4.1). A long-term care insurance system was launched in 2000 to address the needs of growing numbers of older people with impairments and support their independence. The system was established to shift the burden of family caregiving to social solidarity, shifting cost sharing through insurance payments and integrating long-term medical care and welfare programs (Yamada & Arai, Reference Yamada and Arai2020). The system is highly decentralised, with the municipalities operating as insurers that collect long-term care insurance contributions, provide insurance benefits and manage the long-term care insurance finances. They are also responsible for assessing eligibility using a 74-item questionnaire based on ADLs (Jin et al., Reference Jin, Iwagami, Sakata, Mori, Uda and Tamiya2022). (A detailed discussion of systems for determining eligibility for long-term care is provided by Carrino et al. in chapter 3 of this volume.)

The long-term care insurance covers in-home services (e.g., home visits/day services and short-stay services/care) and services at facilities, including long-term care welfare facilities (also called special nursing homes), long-term care health facilities (also called geriatric health services facilities), and long-term care medical facilities (also called medical long-term care sanatoriums). There are no cash benefits or other direct benefits for family caregivers. Health care managers are actively involved in care plans and service arrangements. Individuals deemed not eligible for long-term care or support may still use preventive care services (Yamada & Arai, Reference Yamada and Arai2020).

Following the adoption of the long-term care insurance system, there was a significant growth in the number of people eligible for long-term care, leading to substantial increases in the government’s financial burden. As a result, the Japanese government launched a disability prevention programme in which older persons were assessed for frailty using the so-called ‘Kihon’ checklist and a strategy with community-specific preventive activities aimed at high-risk individuals. The Kihon checklist, however, proved insufficient to identify individuals at high risk of disability; additionally, engagement in local intervention programs was relatively low (Yamada & Arai, Reference Yamada and Arai2020).

Following the unsatisfactory outcomes of the high-risk approach to disability prevention, the government shifted to a community-based strategy. This strategy aims to set up a community-based integrated care system by 2025 that can provide seamless preventive, medical and long-term care, as well as welfare and housing services to all individuals (Yamada & Arai, Reference Yamada and Arai2020). Home care will play a key role in this community-based integrated system, but this will need the development of home medical care, home visit services and nursing care. In terms of disability prevention, central and local governments have been promoting community activities, such as salons, to facilitate group participation and encourage social activities among older people (Yamada & Arai, Reference Yamada and Arai2020), which have had positive results in reducing disability incidence and cost (Yamada & Arai, Reference Yamada and Arai2017; Saito et al., Reference Saito, Haseda, Amemiya, Takagi, Kondo and Kondo2019).

Important challenges remain. First, the long-term care insurance system’s capacity to prevent disability is still insufficient and needs further attention. Second, there are not enough geriatricians and physicians who practice geriatrics. A strategy is needed to stimulate and motivate physicians to provide frailty prevention in their daily practice. Third, most physicians still employ a disease-oriented rather than a function-oriented approach for older persons, which needs to be addressed in training and continued professional development (Yamada & Arai, Reference Yamada and Arai2020).

Norway: A strong focus on de-institutionalisation and integration has resulted in a large proportion of older people receiving care at home

In Norway, the government formulates the overall care policy for long-term care, while the municipalities are responsible for planning and providing long-term care services (Sogstad et al., Reference Sogstad, Hellesø and Skinner2020). They are financed through general tax revenue, block grants from the government and user charges (Grødem, Reference Grødem2018; Theisen, Reference Theisen2020). Services are provided in nursing homes, sheltered housing and in people’s homes (Sogstad et al., Reference Sogstad, Hellesø and Skinner2020). The guiding principle for providing long-term care, no matter the setting, is enabling people to stay in their homes for as long as possible (Sperre Saunes et al., Reference Saunes, Karanikolos and Sagan2020).

The role of Norwegian municipalities in long-term care services has gradually changed since the 1970s (Hagen & Tingvold, Reference Hagen and Tingvold2018; Sogstad et al., Reference Sogstad, Hellesø and Skinner2020), which has led to increasing decentralisation, integration, and de-institutionalisation (Hagen & Tingvold, Reference Hagen and Tingvold2018). In 1988, the responsibility for nursing homes was transferred from regional to municipal authorities (Otnes, Reference Otnes2015). Between 1991 and 1995 the responsibility for the care of persons with developmental disabilities was placed with the municipalities. The aim of the reform, known as the HVPU reform, was to shift care from institutions to home care. As a result, people younger than 67 years now account for 42 per cent of recipients of home-based care in Norway (Helgheim & Sandbaek, Reference Helgheim and Sandbaek2021). In 2008, the government introduced ‘Care Plan 2015‘, aiming to gradually expand municipal care services (Helse- og Omsorgsdepartmentet, Reference og Omsorgsdepartementet2008). As part of the plan, an investment grant scheme for nursing facilities and residential care homes was established, administered by the Norwegian State Housing Bank (Helse- og Omsorgsdepartmentet, Reference og Omsorgsdepartementet2008; Hagen & Tingvold, Reference Hagen and Tingvold2018). The aim was to encourage the municipalities to increase and improve their existing nursing and care homes, aiming to increase the quality of care (Westberg et al., Reference Westberg, Skjeflo, Hveem, Pedersen, Øien and Sørvoll2019).

In 2012, the Coordination Reform was implemented, aiming to improve the coordination of care between municipalities and hospitals (Sperre Saunes et al., Reference Saunes, Karanikolos and Sagan2020). Following the reform, the care services landscape evolved, with municipalities increasingly establishing specialised care services for different user groups and their care needs (Sogstad et al., Reference Sogstad, Hellesø and Skinner2020). Examples include municipal acute inpatient units with 24-hour admissions, larger and more specialised short-term care units in nursing homes, and home care teams with particular expertise in dealing with specific patient groups (e.g., people with dementia) or providing specific services (e.g., palliative care and rehabilitation) (Sogstad et al., Reference Sogstad, Hellesø and Skinner2020). With the Coordination Reform, the municipal level was tasked to create more comprehensive and coherent services, which created new demand and required municipalities to build health services to a larger extent than before (Spasova, et al., Reference Spasova, Baeten, Coster, Ghailani, Peña-Casas and Vanhercke2018). Therefore, the transition from hospitals to municipalities has remained burdensome. The reform may have solved some problems but also created new challenges. For example, the ombudsman for users and patients has expressed concern that the reform requires hospitals to discharge patients after treatment when hospital care is concluded and transfer responsibility to the municipality. At the same time, the municipalities may not have the necessary services in place. The transition phase has proven complex, and there have been instances where it resulted in lower quality of care (Spasova, et al., Reference Spasova, Baeten, Coster, Ghailani, Peña-Casas and Vanhercke2018). Evaluations of the effects of the Coordination Reform have shown mixed results. However, the reform has generally supported care delivery at the lowest, most effective level of care and it paved the way for primary care and public health reforms in 2015 (Sperre Saunes et al., Reference Saunes, Karanikolos and Sagan2020).

As a result of the Coordination Reform, there was a shift in tasks between specialised and municipal health services, resulting in shorter hospital stays and more patients discharged to municipal health services (Utviklingssenter for sykehjem og hjemmetjenester, 2021). Consequently, there is a need for professional restructuring with a higher level and different kinds of expertise, new work methods and new professional approaches (Ministry of Health and Care Services, 2013; Ministry of Health and Care Services, 2020). For example, between September 2014 and January 2015, the municipality of Eidsberg piloted a project on virtual wards, which is not an actual department but a way of organising resources (Eidsberg Municipality, 2015). The virtual wards followed a patient directly to their home after discharge from hospital and consisted of a team of doctors and physiotherapists headed by a nurse with advanced training in geriatric nursing (Ministry of Health and Care Services, 2020).

The government’s Care Plan 2015–2020 introduced reablement as a key priority area (Ambugo, et al., Reference Ambugo, Dar, Bikova, Førland and Tjerbo2022; Vabø, et al., Reference Vabø, Zechner, Stranz, Graff and Sigurðardóttir2022), which is also referred to as everyday rehabilitation or rehabilitation for people living at home (Ministry of Health and Care Services, 2020). A broadly used definition of reablement is ‘a person-centred, holistic approach that aims to enhance an individual’s physical and/or other functioning, to increase or maintain their independence in meaningful activities of daily living at their place of residence and to reduce their need for long-term services’ (Ambugo et al., Reference Ambugo, Dar, Bikova, Førland and Tjerbo2022:2).

Another key policy area highlighted in the Care Plan 2015–2020 is the need for new architecture and (digital) technology to strengthen current services and prepare for the future care needs of the population. One element of this policy area is the continuation of the Norwegian State Housing Bank’s investment grant scheme for nursing facilities and residential care homes. One example of a project for residential care homes and nursing homes is a shared housing facility for people who need 24-hour nursing and care in Trondheim (Ministry of Health and Care Services, 2020). Another element of the policy area is the national programme for the development and implementation of welfare technology. Welfare technology can help people cope with their daily lives and health issues, allow more people to live longer in their own homes despite reduced functionality, and help prevent or postpone admission to an institution (Ministry of Health and Care Services, 2020). Some of the more common technologies are safety alarms, GPS, cooker monitors, electronic calendars, electronic medicine dispensers and various sensors (Tjerbo et al., Reference Tjerbo, Førland, Sørvoll, Hagen, Fosse and Ambugo2022).

Romania: National policy aims to increase community-based provision of long-term care services but lack of resources limits progress and private providers are filling the gap

Rooted in legislation adopted in 2000 (Law 17/2000 on Social Assistance for Older People), the current structure of the Romanian long-term care system, eligibility criteria, care services and the settings in which they can be provided were established by Law 292/2011 on the Social Assistance Framework (Legea-cadru a asistenței sociale). Important service capacity and development progress has been achieved since then. The legislative framework has been completed to include quality and cost standards for long-term care services (European Commission, 2021b). At the same time, the Romanian long-term care system remains severely underfinanced and underdeveloped, both concerning the estimated care needs it aims to respond to and in comparison to other EU countries (European Commission, 2021a). Accessibility, affordability and quality of care services are pressing concerns, while the sustainability of a system facing marked workforce shortages and heavily reliant on informally provided care is threatened by prevalent sociodemographic and population migration trends, as well as by the lack of meaningful support for informal caregivers (Ministry of Labour and Social Justice, 2018). High levels of fragmentation pose an additional challenge, leaving care users and their families to navigate a complex system with very little support.

Long-term care benefits and services are distributed between the health care systems (home health care), the national system for the support of people living with disabilities (51 per cent of beneficiaries are aged 65 and above), and the social assistance for older persons system. Following the adoption of the Framework Law of Decentralisation 195 (Legea-cadru a descentralizarii) in 2006, local councils hold responsibility for planning, financing and organising public service provision in their territorial areas. As many local councils lack both the financial resources and the residential capacity to develop care services, chronic underfinancing in long-term care is the norm rather than the exception across Romanian municipalities (WHO, 2020b). In the absence of meaningful accountability and enforcement mechanisms, paralleled by limited and sporadic allocation of central budget financial resources, national authorities have little scope to support a more equitable and coordinated development of care services. Noteworthy is the launch and progressive expansion of the national community care programme (Asistență medicală comunitară), pooling financial resources from national health, social and education budgets and coordinated across all three relevant ministries. In 2021, the community care programme supported 1,800 community care workers and 500 health mediators operating in the most deprived communities, where they often represent the only access to health or long-term care support (WHO, 2022a; Ciurea et al., Reference Ciurea, Faracasanu, Motea and Onofrei2021).

The National Strategy for Promoting Active Ageing 2015–2020 also recognised the development of the national long-term care system as one of its strategic objectives. It emphasised the need to strengthen the community-based provision of long-term care services and accelerate progress on de-institutionalisation. During the implementation period, three national programmes were launched, pooling European financing and national funding from the central budget. They represent the most ambitious investment to date in the development of the delivery network for community-based long-term care services, targeting primarily underserved and deprived communities.

Despite a political commitment to promoting community-based care and these recent positive developments, it is apparent that the pace of progress is insufficient to meet and keep up with expected increases in population care needs. Data collected in 2019 across Europe indicate Romania has the highest share of older individuals in need of long-term care (more than 55 per cent) but the lowest share of older people who are able to access home-based care services – 4.7%, in comparison to over 50 per cent in Denmark and an EU average of over 20 per cent (European Commission, 2021a). Moreover, there is no indication that current policies can put Romania on a pathway toward closing the vast gap between needed and available care, especially in community-based settings. Increases in care service capacity in recent years, while considerable in relative terms, have been largely concentrated among residential care providers. Between 2017 and 2020 the number of residential care facilities for older people virtually doubled, while the number of day care centres grew by one-third and that of home-based care providers by only one-fifth (National Institute of Statistics Romania, 2022). These data highlight the necessity of dramatic increases in formal care services investment in Romania to ensure service capacity grows rapidly; but importantly, such policies must be paired with targeted legislation and earmarked funding for the specific development of community-based care options.

At the same time, the data point to another complementary and significant marketisation trend in the development of the Romanian long-term care system: highly differentiated growth patterns in terms of type, speed and concentration between privately and publicly owned care services. A decade ago (2012), a comparable number of private and public residential care providers were licensed to operate in Romania, with the bulk of residential care capacity accounted for by publicly owned facilities. In the intervening years, the private residential care market grew at an accelerated pace while public provision remained sluggish in its development. The most recent data at the time of writing (April 2022) indicate a profound restructuring of the residential care sector: 83 per cent of all residential care providers in Romania are privately owned entities, which account for 76 per cent of the total residential care capacity (number of beds/places) (Ministerul Muncii si Solidaritatii Sociale, 2022). In contrast, increases in the number of home-based care providers have been more rapid for publicly owned providers, supported by national investment programs, and comparatively slower for privately owned providers in the face of high operational costs, difficulties in attracting and retaining workers and smaller profit margins. As a result, Romania has failed to meet its goal of de-institutionalising care provision for older people with care needs. It is unclear whether this goal can be achieved without redesigning financing models and incentive structures for private long-term care providers.

Rapid growth in private provision has no doubt helped to alleviate unmet care needs, but it has also led to deepening inequalities in access to care as these options are not uniformly distributed across the country or covered by public insurance. Private provision is highly concentrated in those localities where both the demand for care and the willingness to pay for care services are high and stable. More urbanised and more economically developed counties benefit from this capacity increase, while rural and lower-income counties and communities remain severely underserved. In addition, a highly privatised long-term care provision with an overwhelming representation of for-profit private providers raises significant quality concerns. Despite having revised quality standards and assurance mechanism, Romanian authorities have been struggling to inspect and enforce these standards with regularity, as reflected in a series of scandals about severe abuse and improper conditions, particularly in residential care centres. Romania’s case highlights the crucial role of public authorities in regulating, monitoring and providing adequate incentives for high-quality long-term care delivery, even when provision of care services is primarily delegated to the private sector.

Sweden: National policies focus on de-institutionalising and better coordination of long-term care services, while allowing the private sector to offer such services

The long-term care system for older people in Sweden is a public, tax-financed and comprehensive system regulated through the Swedish Social Services Acts from 1982. The responsibility for long-term care for older people is divided between the national, regional and local levels of governance. The parliament and government set the overall policy targets and directives at the national level, while service provision is split between the regions and municipalities. The regions provide health care and medical treatment. The municipalities provide social care as either residential care (i.e. nursing homes, residential care facilities and group homes for persons with dementia) or home help care and services (Schön & Heap, Reference Schön and Heap2018).

Previously, the county councils were responsible for providing care for older people. However, a community care reform (the Adel reform) in 1992 shifted the responsibility to the municipalities. The aim of the reform was to increase productivity at the hospital level and build a long-term care system based mainly on home care (Stolt & Winblad, 2008). Consequently there has been a reduction in the number of hospital beds, closure of residential facilities, and an increasing number of people being helped at home rather than in institutions (Schön & Heap, Reference Schön and Heap2018). This is in line with the ‘ageing in place’ policy, which has dominated Swedish long-term care policy in recent years (Schön & Heap, Reference Schön and Heap2018). In the years since the community care reform, Sweden has constantly expanded and strengthened the provision of home-based services, and today Sweden is held up as an example of successful home care for older people (Šiška & Beadle-Brown, Reference Šiška and Beadle-Brown2020). However, home-based services have not increased at such a rate that it has outweighed the reduction in residential care capacity.

The reform also addressed the fragmentation between health and social care by introducing a reimbursement system for delayed hospital discharges and making joint care plans mandatory. Consequently, collaboration between health professionals and social workers has increased, ensuring appropriate care and smoother transitions for users between different levels of care (Ilinca, et al., Reference Ilinca, Leichsenring and Rodrigues2015).

Two long-term care policy trends that have co-existed in Sweden are marketisation and integration (Bihan & Sopadzhiyan, 2017). Various laws have been particularly important for the marketisation of social services. In 1992, a local government act enabled municipalities to introduce a purchaser-provider split and outsource the provision of care for older people to both for-profit and not-for-profit providers (Erlandsson et al., Reference Erlandsson, Storm, Stranz, Szebehely, Trydegård, Meagher and Szebehely2013; Moberg, Reference Moberg2021). Another key piece of legislation is the Act on System Choice in the Public Sector from 2009, which facilitated the introduction of consumer choice models without a process of competitive tendering and procurement (Meagher & Szebehely, Reference Meagher and Szebehely2010; Erlandsson et al., Reference Erlandsson, Storm, Stranz, Szebehely, Trydegård, Meagher and Szebehely2013). By 2019, about 159 of 290 municipalities offered a user choice in their home-based care, and 21 offered a choice in their residential care (Moberg, Reference Moberg2021). The Act on Tax Deductions on Household Services and Personal Care, which came into force in 2007, is another example of market policies (Szebehely & Trydegaård, 2012; Erlandsson et al., Reference Erlandsson, Storm, Stranz, Szebehely, Trydegård, Meagher and Szebehely2013)

The division of responsibilities between regions and municipalities in Sweden has not proved favourable for good coordination between the different care levels. Therefore, in recent years policies to improve care coordination, especially for older people with complex health problems and severe needs, have been high on the social policy agenda. The TioHundra organisation in Norrtälje municipality is one example of an integrated care model attempting the manage these problems (Agerholm et al., Reference Agerholm, de Leon, Schön and Burström2021). Founded in 2006 and owned, financed and managed jointly by the Norrtälje municipality (responsible for social care) and Region Stockholm (responsible for health care), TioHundra operates as a single comprehensive health and social care organisation (Agerholm et al., Reference Agerholm, de Leon, Schön and Burström2021).

Despite these important developments, the interface between health care and municipality care continues to be a problem area (Myndigheten för vård- och omsorgsanalys, Reference för vård- och omsorgsanalys2021). Furthermore, a government investigation recently concluded that people in long-term care do not have access to health care to the same extent as the general population (SOU, 2022). There are thus structural deficiencies in long-term medical care of older people, such as the shared responsibility between regions and municipalities, which may result in insufficient access to medical competence and equipment, staffing shortages and a lack of trained or licensed staff as well as deficient working conditions for staff (SOU, 2020).

1. De-institutionalising the care system requires building up community-based care solutions and investing in support services for informal caregivers

Most older people prefer to stay in their own homes and receive community-based care. This has a dual benefit, in that it can improve access to services while reducing the need for more expensive residential care and therefore contribute to a more efficient system. Indeed, shifting from residential care to home care services has been high on the reform agenda in many European countries, but often fails because home-based care services have been underdeveloped. De-institutionalisation should therefore be accompanied by policies that promote and facilitate community-based care solutions. This implies policies that help build up home care services and local support networks. For instance, in Sweden and Norway, community-based care solutions include policies that promote home care while at the same time making the eligibility criteria for residential care stricter. This requires reallocating public funding and insurance coverage towards home and community care – sometimes with the help of financial incentives as seen for example in Germany. Furthermore, de-institutionalisation should go hand in hand with the development of support services for informal caregivers. For example, in Sweden, the lack of support for informal caregivers has been a barrier to de-institutionalisation. Other countries can learn from this and invest in programmes and services that provide assistance to families and friends taking care of older people and people with disabilities. These policies should also take a holistic view of the patient and address the issue that some people will not have informal arrangements available, for example because they lack a supportive social network and environment or because they have severe limitations in everyday activities that require more intensive support. Moreover, having a sufficient and well-trained workforce is crucial for successful implementation. Countries should invest in training and education for health care professionals to ensure they have the skills necessary for modern care models that enable more people to live at home.

2. Effective regulation and oversight are crucial to mitigate the potential downsides of privatisation in long-term care

The case studies highlight various strategies employed in the countries to address the increasing demand for long-term care services through allowing private initiative. These strategies include allowing private provision of long-term care services, enabling private for-profit care institutions to qualify for public funding, contracting beds in commercial long-term care homes, introducing market incentives and personal care budgets, and fostering private sector participation through changes in the regulatory framework. While these approaches aim to meet the growing need for long-term care services, they also come with potential negative effects that must be carefully considered and monitored.

Privatisation in long-term care can pose challenges such as difficulties in monitoring and maintaining quality standards, leading to variations in care quality and increasing the risk of abuse against vulnerable care users. It can also result in equity issues, with access to high-quality care often favouring those who can afford private services. Perverse incentives may arise, where private providers prioritise patients with less expensive care needs over those with more complex and thus costly requirements. Additionally, there is a risk of insufficient investment in preventive and rehabilitative care. Privatisation can lead to service fragmentation, making it harder for users to navigate a complex system with multiple providers. Furthermore, inadequate workforce capacity and access inequalities between urban and rural areas have the potential to deepen disparities in care provision. Effective regulation and oversight are crucial to mitigate these potential downsides and ensure that privatisation in long-term care aligns with the goals of quality, equity, coordination and patient-centredness in care delivery.

3. Digital solutions have the potential to boost access and efficiency in long-term care when thoughtfully implemented to address unique contextual needs and challenges

Digital technologies can play a pivotal role in transforming the landscape of long-term care services, with the potential to enhance the quality of care and the overall wellbeing of older people, their families and caregivers. These technologies, when accompanied by proper user support and training, enable improvements in daily activities and quality of life. Robust digital infrastructures facilitate communication between health care workers, long-term care recipients, their families, informal caregivers and local communities. Digital tools can facilitate remote monitoring by providers, enhance safety through ‘smart home’ technology and enable telecare and telehealth, promoting seamless interaction among care users, formal providers and informal caregivers. This integration strengthens the efficiency of care provision across different long-term care and health care services, ultimately allowing individuals with long-term care needs to remain in their homes or communities, reducing the need for more expensive residential care.

However, the widespread adoption of ICT in long-term care carries the risk of further deepening existing inequalities in access. While the use of digital technologies has grown significantly among healthy older people in Europe, implementation and utilisation of digital tools can be challenging, particularly when individuals lack access or digital literacy. Ensuring the mainstream use of digital technology in long-term care requires continued investment in digital literacy for care users and their families. Furthermore, it creates a demand for new professional roles and skills, necessitating training and capacity building as well as the involvement of professional end users in the development of new systems. This shift also raises ethical concerns related to data privacy, fairness and human oversight of digital and automated solutions. Moreover, disparities persist between European countries in terms of connectivity, internet service use and digital product adoption, highlighting the context-dependent nature of ICT implementation in long-term care.

4. Successfully implementing integrated and well-coordinated long-term care requires a common vision and careful planning

Several countries have embarked on long-term care reforms to enhance coordination and integration. Initiatives have been taken to establish integrated networks of home care services, care management systems and collaborative programs that bridge medical and social care. Improved coordination and integration of long-term care services offer numerous benefits in terms of access, efficiency and overall quality of care. In many countries, long-term care services encompass a wide array of providers and funding schemes, often leading to fragmentation and overlapping responsibilities. This can result in poorly coordinated care that falls short of being patient-centred. A solution to this challenge is the integration of services within the long-term care spectrum and the broader health care system. Such integration involves targeted community-based care, collaboration among various professionals in interdisciplinary teams, and proactive patient care coordination throughout the continuum of care. This approach aims to provide a more seamless, effective and positive care experience, particularly for individuals with complex health needs.

However, it is important to note that while integration can bring substantial benefits, it also presents challenges and potential negative effects if not executed carefully. This includes issues related to care quality, workforce training, ethical considerations and the need for robust communication and cooperation among providers. Moreover, during crises like the Covid-19 pandemic, integrated perspectives on long-term care provision have sometimes been overlooked, resulting in underperforming long-term care systems. Thus the successful implementation of integration policies requires a common vision across stakeholders, careful planning, adequate workforce preparation and a commitment to addressing the unique needs and challenges of each context.