Developments in long-term care across European countries

In line with the general population ageing across European countries, expenditure on long-term care (LTC) has been rising faster than that on general health care (Costa-Front, Courbage and Zweifel, Reference Costa-Front, Courbage and Zweifel2017). However, compared with other welfare services in most European countries, LTC still seems to be substantially less subsidized (Costa-Font and Zigante, Reference Costa-Font and Zigante2020). The growth in public expenditure for LTC services is expected to continue to increase (Barczyk and Kredler, Reference Barzcyk and Kredler2019), a trend that is not merely propelled by the population ageing, but also other factors such as changing family structures and an increase in female working life participation (Costa-Font and Zigante, Reference Costa-Font and Zigante2020).

The cultural and historical context for design and organization of long-term care appear to be important (World Bank, 2010). While public home-based care in Europe is a post WWII phenomenon, institution-based care, mainly nursing homes, has longer historical roots, originally deriving from the so-called poor house around the mid-19^th century. For several decades, until the late 1970ies and early 1980ies, the hospital used to be the ideal model for architects and planners of nursing homes. While the coverage of nursing homes and their form and content vary much across Europe, a general trend of profiling nursing homes as ‘real’ homes has taken place in most of Europe since around mid-1980ies. Smaller residential units and singular occupancies with room for own furniture and personal belongings have many places been part of this trend (Hauge and Heggen, Reference Hauge and Heggen2008).

How formal long-term care is organized varies much between European countries. A study investigating the organization of long-term care in ten old and 11 new EU members states found that in around half of the countries, the regulation and decision-making responsibility was at the national level, while responsibility was shared across different government levels in the other half. This holds true both for institution-based and homebased care. In general, regulation and organization of care seem to be more centralized in new member states, like, for example, the Czech Republic and Romania, compared to old member states, like for example, France and the Netherlands (Riedel, Kraus and Mayer, Reference Riedel, Kraus and Mayer2016). Nearly all of the 21 countries have legal entitlement to long-term care, with the exceptions of England, Austria, and Romania, where, e.g., England entitlement is granted for home nursing but not for institution-based nursing or practical home help. In six of the 21 countries, long-term care is means tested, with no tendency towards geographical clustering or any clear difference as to old and new EU member states (ibid.).

The public expenditure of LTC services across Europe varies substantially between countries, as does informal care from family members. In Europe, the Scandinavian and Benelux countries appear as the most universally publicly funded as to LTC services, where benefits for people in need of LTC services are typically in kind rather than cash benefits (Barzcyk and Kredler, Reference Barzcyk and Kredler2019). Southern European countries like Spain and Italy, by contrast, tend to have the smallest LTC public spending, the largest private individual spending, and the least comprehensive formal LTC sector. The central European countries, like Germany, Austria, and France, tend to have a more extensive public funding than southern countries but less than northern European countries. This north-south gradient seems to go together with an inverse trend as to contribution of informal care: informal care plays a significant role in the southern countries as compared with the northern ones. Furthermore, the nursing home coverage and availability is substantially lower in southern than in northern countries (Barzcyk and Kredler, Reference Barzcyk and Kredler2019).

As to central and eastern European countries, there seems to be much variation regarding how LTC is covered and as to the availability of nursing homes and other LTC services (van Eenoo et al., Reference Van Eenoo, Declercq, Onder, Finne-Soveri, Garms-Homolova, Jónsson, Dix, Smit, van Hout and van der Roest2016; Luczak, Reference Luczak2018). As an example of the variation in the LTC services, nursing homes (sometimes labelled care homes in international literature), seem to be the most common formal care institutions for so-called dependent people (Necel, Reference Necel2023) and have increased in number and availability since the early 1990ies. By contrast, the Czech Republic has far more developed system of social care than supply of nursing homes (Luczak, Reference Luczak2018). In general, long-term care appears to be primarily delivered in the form of institution-based care (like nursing homes) in new EU member states, whilst home-based care (including home nursing) seems more developed in old EU member states (Riedel, Kraus and Mayer, Reference Riedel, Kraus and Mayer2016).

The type of legislation governing long-term care appears to vary much across European countries as well. Even within the Scandinavian countries, the situation is not uniform. For example, long-term residential care is covered by social and housing legislation in countries in Sweden and Denmark while being part of health and medical legislation in Norway (Daatland et al., Reference Daatland, Høyland and Otnes2015).

Eurofound’s reports from 2020 and 2022 and the Organisation for Economic Co-operation and Development (OECD’s) report from 2023 highlight critical challenges faced by the long-term care sector. Both the quality of and access to long-term care were negatively affected by the pandemic. The pandemic significantly strained the sector, revealing pre-existing issues such as staff shortages, low wages, high job insecurity, and limited career progression opportunities. Additionally, workers often endure physically and emotionally demanding conditions, long hours, and inadequate working environments, which contribute to high levels of stress and job dissatisfaction. The pandemic exacerbated these problems, leading to increased workloads and insufficient support for many workers (Eurofound 2020; 2022; OECD 2023).

Active ageing policy trend in Europe: benefiting the frailest old?

In 2012, the European Union stated that ‘never before has Europe enjoyed such a large proportion of healthy older people’ (European Union, 2012:1). The year 2012 was the European Union’s Year for Active Ageing and Solidarity between Generations, a commitment that later has been referred to and reflected in European health policy documents. The policies aiming at active and healthy ageing pay attention to the trend that people in Europe and beyond are ageing, and that, even though the number of frail and ill older adults is increasing, the proportion of assumed healthy older adults is growing (WHO, 2022). Considering this, states and public sectors have gradually moved away from a model of providing for, caring for, and protecting the general populations, towards a model of activation and rehabilitation (Torfing, Reference Torfing2004; Pedersen, Reference Pedersen2011), in which prevention as opposed to treatment is prioritized, and where self-reliance is emphasized (Stephens, Reference Stephens2017).

Clearly, a policy of healthy ageing, in which older adults’ resources and capabilities are emphasized and where the concept of healthy ageing includes active ageing (WHO 2020), has the potential to benefit many. An ageist approach, by contrast, is characterized by lack of appreciation of skills, potentials, and resources in older adults. Still, the questions can be raised if this recent policy trend is equally beneficial for all segments of a growing ageing population. While relatively healthy older adults may find themselves more included in the general society than before this recent trend, the policies might not be as adapted towards all older people, in particular frail older adults (Munkejord et al., Reference Munkejord, Eggebø and Schönfelder2018). In other words, discourses addressing resources, potentials, and capabilities of older adults might be exclusionary by default for many of them (Dahl, Reference Dahl2017; Gibbons, Reference Gibbons2016; Stephens, Reference Stephens2017). Frail older adults, not the least, older adults living in nursing homes, may hence have become less visible in the context of the ageing at home/ageing in place policy trend. This may have become an unwarranted consequence of shifting the attention towards the healthiest of older adults.

The COVID-19 pandemic has both highlighted and aggravated the vulnerability of the frailest older adults. Internationally, the outbreak of COVID-19 has affected people living in nursing homes particularly hard (Comas-Herrera et al., Reference Comas-Herrera, Zalakaín, Litwin, Hsu, Lemmon, Henderson and Fernández2020), influencing their somatic, mental, and social health. Consequently, the pandemic has highlighted dimensions of nursing home care that need to be reflected on and improved, not the least, related to social activities and to supporting social relationships with significant others, relevant also in a non-pandemic situation.

Present unmet needs, loneliness, and deterioration of physical abilities and cognitive functioning in this population are all examples in the research literature of how a vulnerable population became more vulnerable during the pandemic (Lood et al., Reference Lood, Haak and Dahlin-Ivanoff2021; Noten et al., Reference Noten, Stoop, De Witte, Landeweer, Vinckers, Hovenga and Luijkx2022; Paananen et al., Reference Paananen, Rannikko, Harju and Pirhonen2021; Pérez-Rogdrígues et al., Reference Pérez-Rogdrígues, Diaz de Bustamente, Mollá, Arenas, Jiménez-Armero, Esclapez, González-Espinoza and Boixareu2021; Rand et al., Reference Rand, Silarova, Towers and Jones2022; Van Maurik et al., Reference Van Maurik, Bakker, van den Buuse, Gillissen, van de Beek, Lemstra, Mank, van den Bosch, van Leeuwenstijn, Bouwman, Scheltens and van der Filer2020). Measures of infection control involved harsh means of physical isolation on facility level, ward level, and in many cases resulted in older adults being isolated in their own room or apartment for substantial periods of time.

The OECD (2021) underscored the need for comprehensive and sustained policy efforts to address the challenges faced by the LTC sector, enhance its resilience, and ensure high-quality care for older adults. Also, the European Commission et al. (2021) underscored the urgency of addressing the challenges facing LTC systems across Europe and provided valuable insights into potential reforms and improvements that can help ensure high-quality and sustainable care for the ageing population.

The primary questions asked in this position paper are:

1. 1. How can healthy ageing be supported for frail older adults in nursing homes and other long-term residential care settings, in the event of a pandemic/epidemic and in general?

2. 2. What obstacles and opportunities can be identified for aiming at both safety from infectious diseases and meaningful social lives for older adults?

Physical environment

The built environment of nursing homes both influenced the extent to which they avoided or limited infection, and the extent to which they allowed for social activities and social life for people living there. Regarding infection control, the size of nursing homes has been found to be correlated with higher numbers of infected older adults. Large facilities were associated with a significantly higher incident of COVID-19 infections than smaller facilities in both North American (Abrams et al., Reference Abrams, Loomer, Gandhi and Grabowski2020; Mathematica, Reference Mathematica2020; Sabatino and Harrington, Reference Sabatino and Harrington2021) and Australian studies (Ibrahim et al., Reference Ibrahim, Li, McKee, Eren, Brown, Aitken and Pham2021). In particular, nursing homes that are both large and old have proved vulnerable to outbreaks of COVID-19 (Stall et al., Reference Stall, Jones, Brown, Rochon and Costa2020).

By contrast, smaller nursing homes had averagely less COVID-19 infections and deaths than larger nursing homes. This was seen in smaller more home-like nursing homes having singular occupancies with own bathrooms, a stable staff with restricted use of non-permanent and parttime positions, and having cooking and laundry services ‘in-house’ (Zimmerman et al., Reference Zimmerman, Dumond-Stryker, Tandan, Preisser, Wretman, Howell and Ryan2021). Furthermore, nursing homes combining smaller units and singular occupancies with good outdoor areas, including balconies and accessible green open spaces onsite or nearby the nursing home, also had less COVID-19 infections (Leskovar and Klemencic, Reference Leskovar and Klemencic2022). Nursing homes combining singular occupancies with smaller units that can be physically closed off in the event of an outbreak and indoor spaces for meetings and social encounters in the nursing home at safe distance from the wards, also seem to limit contagion (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021). In addition, those types of smaller nursing homes made a combination of infection control and a rich social life possible (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021; Leskovar and Klemencic, Reference Leskovar and Klemencic2022; Zimmerman et al., Reference Zimmerman, Dumond-Stryker, Tandan, Preisser, Wretman, Howell and Ryan2021).

Features such as old and impractical buildings together with lack of access to protective gear and staff members in quarantine have been identified in facilities most severely infected by COVID-19 (Jacobsen et al. Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021; Strand Reference Strand2020). Examples of building features that seem to have played a significant role, in addition to the already mentioned presence or absence of singular occupancies and opportunities for physically closing off singular wards if infections occurred, are enough exclusive staff space for keeping clean clothes and protective gears separate when changing clothes and having floors and walls that were easy to keep clean (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021).

The built environment of nursing homes could, thus, imply barriers and opportunities for handling a pandemic (or epidemic) situation. How the built environment functioned in total as to keeping older adults safe for infection, and at the same time supporting their social activities and general well-being, related to how it functioned for all the three main categories using the nursing home environment: first and foremost, the older adults living there, but also significant others (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021) and staff (Duijs et al, Reference Duijs, Abma, Plak, Jhinghoeri, Abena-Jaspers, Senoussi, Mazurel, Bourik and Verdonk2023; Rutten et al., Reference Rutten, Backhaus, Hamers and Verbeek2022).

Staff-related conditions and other contextual conditions

Nursing home size and building characteristics were also interrelated with other influential factors connected to how the COVID-19 situation had been handled. An unfortunate interplay between inadequate built environment and a widespread parttime staff employment, where the same staff members worked in several institutions, seemed to have led to a small fraction of nursing homes being particularly exposed to COVID-19 (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021). The number of cases of infected older adults and staff the nursing homes had in the different countries seems, to some extent, to reflect the general level of COVID-19 infections in the country (Comas-Herrera et al., Reference Comas-Herrera, Zalakaín, Litwin, Hsu, Lemmon, Henderson and Fernández2020). However, why, in many cases, a smaller selection of nursing homes represented a significant proportion of deaths could not be explained by this fact. In addition to size and physical characteristics of nursing homes, parttime staff positions were a factor for spreading the disease (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021; Szebehely, Reference Szebehely2020).

Several studies supported the insight that the conditions for staff were conditions for care. Nursing homes with higher staff-to-resident ratio had less incidents of COVID-19 among the older adults (Liu et al., Reference Liu, Maxwell, Armstrong, Schwandt, Moser, McGregor, Bronskill and Dhalla2020; Sabatino and Harrington, Reference Sabatino and Harrington2021; Yau et al., Reference Yau, Vijh, Prairie, McKee and Schwandt2021). Full-time employment was an important measure for avoiding spread of infections, while widespread use of part-time positions, leading to same staff working at more than one institution, made the institutions vulnerable to COVID-19 and other infections (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021; Sabatino and Harrington, Reference Sabatino and Harrington2021). Pre-pandemic low staffing level also had dire consequences during the pandemic. As previously pointed out in this paper, for-profit management of nursing homes tend to be linked to a lower level of staffing than non-profit or public management. The pandemic had a severe impact on nursing homes staffs’ health and well-being as well as working practices, and in particular, in nursing homes with a low staffing level (Hanna et al., Reference Hanna, Giebel, Cannon, Shenton, Mason, Tetlow, Marlow, Rajagopal and Gabbay2022; Hoedl et al., Reference Hoedl, Thonhofer and Schoberer2022; Sarabia-Cobo et al., Reference Sarabia-Cobo, Pérez, de Lorena, Hermosilla-Grijalbo, Sáenz-Jalón, Fernández-Rodrígez and Alconero-Camarero2021). Reduced mental health and exhaustion in the nursing staff were a pronounced result (Yau et al., Reference Yau, Vijh, Prairie, McKee and Schwandt2021). Several other staff-related factors, such as investment in staff training and education were, for example, important in combating spread of infections (Yau et al., Reference Yau, Vijh, Prairie, McKee and Schwandt2021). Dedicated areas for staff also limited spread of infections to older adults (Anderson et al., Reference Anderson, Grey, Kennelly and O’Neill2020), as did sufficient supply of protective gear (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021; Yau et al., Reference Yau, Vijh, Prairie, McKee and Schwandt2021).

Financing and ownership were other factors that seemed to play a role in how nursing homes performed during the pandemic. Large-scale studies indicated that for-profit management and ownership were associated with a higher level of infection, as found both for the United States (Mathematica, Reference Mathematica2020), Canada (Liu et al., Reference Liu, Maxwell, Armstrong, Schwandt, Moser, McGregor, Bronskill and Dhalla2020), and Australia (Ibrahim et al., Reference Ibrahim, Li, McKee, Eren, Brown, Aitken and Pham2021). Public or non-profit management, by contrast, were found to be associated with less infections, better financing, more singular occupancies, and better staff coverage (Liu et al., Reference Liu, Maxwell, Armstrong, Schwandt, Moser, McGregor, Bronskill and Dhalla2020; Mathematica, Reference Mathematica2020).

Social isolation and consequences for older adults

Ensuring both disease control and securing meaningful social life for older adults in nursing homes and other long-term residential care settings was an aim that can, as demonstrated above, be hampered, or supported by the physical environment, staff-related conditions, and other factors like financing and ownership.

Several studies testified to the dire consequences of the pandemic for older adults living in nursing homes in terms of loneliness and reduced wellbeing (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021; Levere et al., Reference Levere, Rowan and Wysocki2021) and increased use of medication, not the least, psychotropic drugs (Campitelli et al., Reference Campitelli, Bronskill, Maclagan, Harris, Cotton, Tadrous, Gruneir, Hogan and Maxwell2021; Stall et al., Reference Stall, Zipursky, Rangrej, Jones, Costa, Hillmer and Brown2021). This development appeared in parallel to a general health decline (Thompson et al., Reference Thompson, Barbu, Beiu, Popa, Mihai, Berteanu and Popescu2020), particularly a decline in functional status and mental health (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021), which works contrary to the defined aim of healthy ageing, which WHO defines as “the process of developing and maintaining the functional ability that enables wellbeing in older age” (WHO, 2020).

A retrospective observational study of three Norwegian nursing homes experiencing early and large-scale outbreak of COVID-19 concluded that the infection in all the cases entered through staff (Kittang et al., Reference Kittang, von Hofacker, Solheim, Krüger, Løland and Jansen2020). Staff seemed the more likely source of infection than significant others and the consequences for the health and well-being of the older adults of social isolation were severe (Kittang et al., Reference Kittang, von Hofacker, Solheim, Krüger, Løland and Jansen2020). Hence one may question the potential gain of isolating people living in nursing homes from their significant others.

Not only people living in nursing home wards with outbreaks of infection suffered from increased social isolation. Dire consequences of social distancing measures for people living at nursing homes were identified also in nursing homes and specific wards where there were no infected older adults. There were substantially less activities for the older adults also in those places, in particular social activities. Contact with family and significant others was a huge challenge, in particular in wards with no COVID-19, but with neighbouring wards with infections, where understaffing resulted from transferring staff to wards with COVID-19 infections and hence less time for following up on those relations. Consequently, a decline in social, mental, and physical health of older adults in nursing home wards with and without infections was recognized by interviewed physicians and care staff alike (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021). Studies from several other European countries showed such dire effects as to lack of social activities and maintenance of social connectedness, for example, a Polish nursing home study (Necel, Reference Necel2023) and an Italian nursing home study where severe cognitive decline and disruption of social life of older adults were reported (Chirico et al., Reference Chirico, Pappadà, Giebel, Ottoboni, Valente, Gabbay and Chattat2023).

Examples of innovative solutions for older adults’ meeting with significant others were identified, like large tents outside the nursing homes or transforming a meeting room used for educational events into meeting rooms catering to older adults. Still, several significant others complained that older adults in nursing homes seemed to have lost hope after a while and decreasingly sought contact (Jacobsen et al., Reference Jacobsen, Arntzen, Devik, Førland, Krane, Madsen, Moholt, Olsen, Tingvold, Tranvåg, Ågotnes and Aasmul2021).

In addition to help guiding the most important themes of this paper and help guiding further literature search following the above mentioned EFPC PRIMORE workshops, the experience and knowledge of the workshop participants have been vital both in strengthening the arguments and validating the conclusions. In general, the participants, all of them from European countries, of whom several have been either researching or working in nursing home as practitioners, subscribed to the importance of the identified organizational and physical aspects for ensuring both safety and a meaningful life for nursing home residents.