Long-term care in Sweden: Reflections on public services, family care, private services, voluntary work and pensioner organizations
Swedish long-term care has a history of several centuries, and this dependence on the path can explain both its successes and some glaring failures. Prevalence rates of home help - health care at home and/or in institutions - have declined, but most older people in need get what they need at the end of their lives, but less than before and for a shorter period. Historical dependence on local funding and administration has always resulted in different availability and quality of public services. These local units are protected by the constitution and are very difficult to run by the national government. The Swedes are well organised in local and national associations and have a history of social and cultural homogeneity. Trust in the authorities and other people is characteristic of Sweden and the other Nordic countries. This includes a willingness to pay high taxes, as long as the authorities are perceived to give value for money. A new feature of the social fabric is the recent strengthening of family ties, with more older people living in partnerships and many more having children. This is also reflected in an increase in informal care provision, as shown in several studies.
Every country and culture is unique, and experiences from one context may not be "transferable" to another setting. Yet, some features of Swedish political life and civil society may have a bearing on core issues in the FEDER project.
Foreign visitors to Sweden are sometimes impressed (or irritated) by the orderliness of social life and that everyone is somehow "organized". It is hard to exactly define the meaning of this, but it may have its root in the history of the country, and the culture this created. The country is still sparsely populated (10 million people 2019) and most people lived in rural areas up to the 1940s. Most farmers owned their land, they were represented in the parliament and its predecessor from the start in the 1400s. The aristocracy was relatively small and weak, owning at most only a tenth of the land and never able to establish feudalism. Swedish culture was and remains quite homogeneous, furthered by the reformation and early efforts to teach parishioners to read: To receive the word of God directly from the Bible is important for protestants. Already in the 1700s most people were able to read passably and compulsory public schools started in 1842.
After the reformation state and church were united. Parishes - a both religious and geographic-administrative unit in the Nordic countries - were by law to provide for their sick and poor, who had no family to do it for them. They were of course often older persons.
Parishes collected taxes for this purpose and had comparatively democratic meetings with locally elected parish members to decide on the use of the funds and other common issues. Records were kept and parishes managed their own affairs, but the provision of poor relief was controlled by the bishop at regular visits. Systematic, public, locally financed and relatively autonomous but mandated local provision for the poor is thus a very old feature of Sweden, which for example was the first country with compulsory smallpox vaccination done by the priest or church warden, in 1816. The modern welfare state has old roots and in many ways follows the path of the past.
The modern welfare state in Sweden has ancient roots and in many ways follows the path begun in the 17th century
When this took form in the late 1500s Sweden had just 750,000 inhabitants, in 2,500 parishes; hence everybody would know (about) everybody else in the parish. When reliable population records - kept by the parish but delivered to a national statistical authority - started in 1749 Sweden had only 1.8 million people, after many devastating wars, famines etc.
The state used the well-organized church and parish administration to draft soldiers, control morale and abidance of the law, collect taxes etc. until 1862. Then the new secular municipalities "took over", but still functioned much the same way and remained geographically the same units, thus preserving an important local identity in the general mentality. The Nordic countries have a simple administration with a strong central state, and strong local units (which do not always follow central directives), with just one weak intervening county administration between them, maybe somewhat different from Spain. It should be mentioned that a national tax equalization scheme tries to smoothen local variations in needs and finances, this was established in 1965 and renegotiated several times and always debated.
This local self-sufficiency has many good aspects, but there are also weaknesses, exposed in the recent corona pandemic which has lead to soul-searching and political turmoil. Local municipalities and regions were remarkably unprepared for and unable to take on the challenge: The national government expected local and regional authorities to take action, as they should according to the constitution, while these authorities waited for instructions from "above". When recommendations on protection etc. were given, they often conflicted and were hard to interpret.
Local self-sufficiency has many positive aspects, but also contains weaknesses, exposed in the recent covid-19 pandemic
Vast differences between regional hospitals and between the municipalities in the quantity and quality of institutional care and Home Help services became visible, with horrific shortcomings in several places.
Some observers point to important, but more recent factors which characterize the small Nordic states (but also The Netherlands, Switzerland and Austria), notably the pressure on these countries to stay competitive, and the relative political consensus in them. This also shapes important traditions, which help keep these societies stable and predictable (Katzenstein 1985).
Sweden has been "lucky" as Tony Judt says somewhere, with access to ample natural resources and being able to stay out of war in recent centuries. He describes Sweden and the other mostly Nordic welfare states as special, rather small, and socially and culturally homogeneous (2005; 2012). Some observers would rather describe this as conformity, and it is a sad fact that Sweden (and the other Nordic countries) long believed in eugenics and sterilized thousands of women (and a few men) to "improve the people".
The social homogeneity has been undermined in recent years with big immigration, a quarterof Swedes now having a foreign "background", often non-European.
Poor relief was often quite extensive in Sweden, and it is easy to find areas in the 1800s which had the same institutionalization rate (4-5%) of older people as today. In year 2000 church and state were finally separated. Most personal tax (ca. 31% of income) paid in Sweden is municipal tax, roughly two thirds goes the one's own municipality, a third to one's region ("secondary" municipalities created in the 1870s), which runs hospitals and health care in general. Both entities are governed by locally elected officials. Only the minority with high incomes (above c. 50,000 euros/year) also pay 20% state tax, on the whole income.
With this background of state involvement and interference with civil society one might expect weak voluntary organizations and little family care. Yet, quite the opposite is the case. In the 1700s and 1800s farmers started fire insurance funds, producer cooperatives, road maintenance associations etc., with or without official encouragement or dictates.
The background of state involvement and its interference with civil society could mean that voluntary organisations are weak and family care is scarce. However, the opposite is true
Workers, office staff and civil servants unionized, modern political parties emerged, people started consumer and housing cooperatives, women's suffrage clubs, religious dissenters organized and built their own churches, there were library associations and educational efforts, associations for charitable work, garden associations, home owner associations and so on. The recent rural history, the transparency of public administrations and all these associations probably helped to create a high level of trust in others and in the authorities. It may also have fostered the high voting rates and a surprising willingness to pay taxes - in comparison with many other countries - found in opinion surveys in the Nordic countries, and in the World Values Study.
Most of the above-mentioned associations are still active and most Swedes are paying members of one or more associations. They lobby and are important pressure groups, and can mobilize members when needed. Associations often collaborate with public administrations, local and national, and frequently receive more or less symbolic financial support.
A suitable example are the pensioner associations, some thousand local ones united in a national federation. About 40% of older persons are members. Locally they run telephone chains for isolated or frail members, and have cultural and other activities such as exercise groups, often with some municipal support (financial, a room for meetings etc.).
About 40% of older people in Sweden are members of a pensioners' association
This "supplements" the more robust and streamlined public services. Historically, voluntary organizations started programs which were later taken over by the authorities. Public Home Help services for older persons thus started as a voluntary activity by the Red Cross and women's organizations in the 1940s, in the 1950s gradually subsidized by many municipalities and eventually "nationalized". (There were similar public services from the 1920s, but only for families where the housewife was sick or having a baby, part of the natalistic policies of that era.)
A related and more recent example is the monitoring of medical prescriptions for older persons, who often consume too many and unsuitable medicines including psychotropic drugs, with big local variations. Central directives to physicians to be more restrictive had little effect, but local activities by pensioner organizations from 2010 began to publish scary statistics on local consumption patterns and efforts to educate older persons - the consumers - was effective and created the right kind of publicity around the issue. The state then hurried to rule that all persons 75+ shall have a specific doctor who monitors medicines, but this has been off to a slow start and is still not working satisfactorily.
Activity in associations is high and if anything increasing over time, judging from repeated surveys 1992 - 2014 (Jegermalm & Sundström 2014; von Essen et al 2020). Older persons are increasingly active in voluntary organizations, although only a few of them are active in "social" undertakings (similar with younger generations). Among persons 65-74 are 82% members of at least one organization, and 43% are active; rates go down after 75, but are still high for the 85+ (Jegermalm & Sundström 2014).
Older persons in Sweden are increasingly involved in voluntary organizations
A stable 4 out of 10 Swedish adults 16-74 report activities in some association, but many of these are for sports and recreational activities etc. Surveys suggest that persons in need rarely receive support from a voluntary organization, at rates of maybe 2-3 per cent (Jegermalm & Sundström 2013; 2014).
Another background necessary to understand Sweden is the unusual demographic history of the Nordic countries. There were as mentioned historically many who never married or had children, at least since 1749 (start of population statistics). For example, about 20% of the women 1749-1900 never had children, and many lost the ones they had before they (the mothers) were old and died themselves. These patterns have changed for the better quite recently, with more people beginning to marry and have children in the 1940s. Older persons increasingly live with a partner (and only a partner, different from Spain, although couple- only relationships increase in Spain) and marriages/unions last ever longer. Today just some 10 per cent of older persons are childless.
It is therefore not surprising that we in fact see stability of family care or even an increase, as shown in surveys from the 1950s and onwards, with the latest in 2018-2019 (Malmberg & Sundström 2020; von Essen et al. 2020). This may be a response to increasingly strict needs assessments in the shrinking public services, but probably also (and more) simply reflects that more people have close family ties. Many more older people live with a partner, and many more have children, grandchildren and other family, and many fewer lack all these ties compared to just a few decades ago (Sundström 2019).
In 2009 a new law required municipalities to offer support to family carers, but surveys suggest that most carers do neither use, nor need or want support for themselves: They want good public services for the person they care for (Jegermalm & Sundström 2013; Malmberg & Sundström 2020). Family obligations were abolished in 1956 in the social legislation, in 1979 in the family law, except for spouses. It had then been obsolete for quite long, yet most care has always been provided by family. An interesting change is the emergence of older (65+) caregivers; they constitute an increasing fraction both of caregivers, and of all hours of family care, in Sweden but also in Spain (Sundström et al. 2018; Malmberg & Sundström 2020).
Persons short on family or social networks at large were more likely to end up in poor relief and poor houses in the past, as they also are in today's public services for older persons. They also more often use voluntary help and support. As indicated, there have been cutbacks in institutional care (now at 4 per cent of the 65+, about the same as in Spain). Needy persons are expected to manage longer with Home Help (comparable to Spanish SAD) and/or other, "minor" services such as transportation services, alarm systems, meals-on-wheels, day care (less extensive than in Spain) etc. Due to this diversification of services that began in the 1970s and 1980s, total coverage of services has declined less.
About 22-23% of older Swedes use one or more public services, in Spain - the only southern European country with extensive public services - about 20%, in both countries with large local variations
It is also much higher than suggested by user rates of just institutional care and SAD, in Spain, and in Sweden and other countries: Many persons who use these other "minor" community services don't use Home Help (SAD). About 22-23% of older Swedes use one or more public services, in Spain - the only southern European with extensive public services - about 20 %, in both countries with great local variations (Sundström et al. 2011, Puga et al. 2011, Puga, Tortosa & Sundström 2015 unpublished manuscript). Swedish studies indicate that about 80 % of older people use one or more public services before they die, but for shorter periods now than earlier. In fact, services are rationed by ever stricter criteria.
It is noteworthy that Swedish services for older persons are not (after poor relief legislation was abolished in 1956) means-tested: Assessments only consider the need and services are used by all social classes: Obituaries for upper-class persons frequently formulate thanks for good public services. Yet, fees for these services are graded both by income (not by property) and by the amount used (about 40% of the users get them for free, due to low income). For affluent people it can therefore be advantageous to find alternative solutions to their needs, usually in the market. A decade ago home maintenance became tax deductible, which makes them an attractive alternative to relatively expensive public services for middle class older persons, described below.
An important aspect of voluntary work and informal (family) care is the relationship between them. It is often assumed that they "compete": If you do this one, you are unlikely to do the other. In fact, many people do both, as found in Swedish surveys (Jegermalm & Sundström 2014). To some degree they mobilize each other. Many voluntaries are recruited by family members or other persons in their social network, and quite a few are carers themselves.
Conversely, it is for example common that carers for a demented person (often a partner) are members of an Alzheimer association and/or a family care association, and volunteers in that organization also, during and after the care commitment. Surveys show high willingness to do (hypothetically at least) voluntary work, among both younger and older people, but most do not want to follow strict schedules in these activities.
In short, in Sweden, the vast majority of older persons who need some kind of help get it from their family, neighbours and friends. When the needs are greater, they also use public services and perhaps some support from a voluntary organization
We may sum up the above in the simple statement that the large majority of older persons who need some kind of help get it from their family, neighbours, and friends. When needs get more substantial, they also use public services - most users get help from their family -, and maybe also some support from a voluntary organization. The fact that most families and voluntaries provide rather small amounts of help does not mean that it is unimportant (that is a bureaucratic perspective), it may in practice make all the difference for the recipient. It rather reflects that most people, young or old, in need have on average rather small needs. Extensive needs of care (other "smaller" needs may be more prolonged) usually emerge during a rather brief (and briefer for men than for women) period at the end of life. At least half of older Swedes then move to an institution, where they spend ever shorter sojourns. Most families seem to continue their attention, but in a different way, also in these settings. Pensioner organizations frequently do voluntary work there as well, but usually insufficient for the needs.
The local and national authorities in the Nordic countries have agreements (Sweden 2009-10) with umbrella organizations of voluntary associations, in the hope of furthering more voluntary work. In Norway the ambitious plan is that 25% of long term care shall be provided this way; whether this is realistic remains to be seen. In Sweden many municipalities have set up clearing-houses, where people willing to be voluntaries and people/organizations who want them can meet (frivilligcentral). There is little evidence on how successful they are.
Market alternatives were common half a century ago, when many older persons lived in sub- standard housing, and needed help with laundry, cleaning, and other practical issues. We know this thanks to a representative survey to older persons done by the government in 1954, after scandals had erupted in institutional care, forcing the authorities to do something. This lead to a strong recommendation to municipalities to primarily provide Home Help, a policy that was supported by government subsidies for several years. With the new Home Help and rising standards of housing private services vanished, but have now reappeared.
Tax subsidies (RUT) introduced in 2007 makes it relatively inexpensive (regardless of age) to buy market services with household chores, including help to cut grass etc. (many older persons have a private home), and especially for persons with middle-range incomes or more. This is now common among older persons, often in combination with public services like Home Help and transportation services, and/or help from family. Use increases with age, with 7% users among people 65 years old, and 18% among 90 year olds (www.scb.se).
In summary, the typical Swedish (Nordic) panorama is that older persons in need draw on a number of overlapping sources of support, help and care. It also seems that many prefer not to be dependent on just one provider, be it their family, the state, or others.
References
von Essen, J., Jegermalm, M., Kassman, A., Lundåsen, S., Svedberg, L. & Vamstad, J. 2020 Medborgerligt engagemang 1992-2019 (Civic engagement 1992-2019, prel. title). Stockholm: Ersta Sköndal Bräcke Högskola. In press.
Jegermalm, M. & Sundström, G. 2013 Carers in Sweden: The support they receive and the support they desire. Journal of Care Services Management, 7, 1, 17-25.
Jegermalm, M. & Sundström, G. 2014 Ideella insatser för och av äldre: En lösning på äldreomsorgens utmaningar? (Voluntary work for and by older persons: A solution to the challenges in care for older persons?). Stockholm: Forum för idéburna organisationer med social inriktning.
Jegermalm, M., Malmberg, B. and Sundström, G. 2014 Anhöriga äldre angår alla! /Older family is everybody’s concern!/. Kalmar: Nationellt kompetenscentrum anhöriga (www.anhoriga.se).
Judt, Tony 2005 Postwar. A History of Europe. New York: The Penguin Press.
Judt, Tony 2012 Thinking the Twentieth Century. New York: The Penguin Press.
Katzenstein, P. 1985 Small States in World Markets. Ithaca: Cornell University Press.
Malmberg, B. & Sundström, G. 2020 Anhöriga i närbild: De har åldrats /Family carers
close-up: They have aged/. Kalmar: Nationellt Kompetenscentrum Anhöriga. In press.
Sundström, G. et al. 2011 Diversification of old-age services for older people: Trade-offs between coverage, diversification and targeting in European countries. Journal of Care Services Management, 5, 1, 36-42.
Sundström, G. 2019 Mer familj, mer omsorg /More family, more care/: Storvreta: Familjen först.
Puga González, D., Sancho Castiello, M., Tortosa Chuliá, M. A., Malmberg, B & Sundström, G. 2011 La Diversification y Consolidación de los Servicios Sociales para las Personas Mayores en Espana y Suecia. Revista Espanola de Salud Publica, 85, 6, 525-539.
Pregunta
Respuestas de los expertos
Gerdt's text, as always, allows us to learn a lot from the Nordic specificities about the place and the changes that old age is experiencing all over the world. Many of these are indeed political and social specificities, but it is also important to remember that, even in very widespread historical processes, this is a region of the world where the "momentum" is early and precursory. In particular, because of their close relationship to the main theme here, these are countries where the demographic-reproductive revolution that is unfolding throughout humanity in just a century and a half began to unfold with considerable anticipation. The majority survival of any generation up to the age of fifty was achieved in Sweden with those born in 1818 (they therefore turned fifty in 1868), while in Spain it was necessary to wait until the generations born in 1905 (they turned fifty in the second half of the 20th century no less). Other areas of the world have begun this crucial demographic change even later, but are undergoing it at a rapid pace, particularly in Asia. This time span is of great importance for understanding many of the differences in the historical calendar with which the milestones of demographic ageing have been reached (change in the population pyramid, efficiency in the birth-to-life year ratio, cohabitation structure in households, historical moment when the majority survival is achieved until old age...).
For all these reasons, the number of elements relating to the way in which Swedish society has been responding to the challenges of ageing is enormous. They have experience of transits through which many other countries will pass later. And one essential field is, of course, the way in which the needs for long-term care are responded to.
It is not certain that the societies of southern Europe will go through identical strategies, but the experience of the interpenetration between public policies (at all scales, with special relevance of local and municipal ones) and associationism and community support seems to be a successful model with many well-established examples and procedures. This model, in which even neighbourhood support is of great importance, has historical roots which Sündstrom magnificently summarises in his text, but which in the case of Spain have been repeatedly frustrated at least since the 19th century. It is not only that the 20th century began with the worst life expectancy situation in the whole of Europe, for health or epidemiological reasons but also because of the living standards and scarce economic resources of most of the population. To these difficulties was added the violence with which absolutism resisted the liberal transition and, in a disastrous way, the forty years of military dictatorship, Hispanic specificities that systematically crushed a considerable part of the associative and transversal collaboration impulses in the country. The subsequent democratic transition had to replace the "top-down" movements and "grassroots" activities in order to deploy social structures of community support and the Welfare State, which Spain was lagging far behind.
The Swedish experience of the interpenetration between public policies (at all scales, with special relevance of local and municipal ones) and the associationism and community support seems to be a successful model with many examples and well established procedures
So this is a huge area of experience gained that can be studied and emulated or at least used as a useful reference. It is common in social science to attribute many of the particular characteristics of Swedish social relations exclusively to the social democratic political institutional environment that has dominated the country for almost a century. We should not ignore that the simple improvement of survival, historically advanced with respect to Europe as a whole, and even more so with respect to humanity as a whole, is also a crucial causal force for understanding the transitions in family forms, the size of descents, couple relationships, cohabitation structures in households... And the collective, and not only political, solutions to the situation arising from the growing need for care by an increasingly older average population.
Indeed, Sweden's unique social, cultural, demographic and political characteristics influence its care of the elderly. Especially unique is the legal abolition of their family obligations and the state's commitment to care for its citizens, although recent economic crises have led to funding cuts and pushed families to care more.
Sweden has always been considered a model of the Welfare State. Among other reasons because of its system of care for the elderly. Currently it is subject to different challenges that make us think more in a myth than in a reality. However, it has many good features that could be emulated by other countries, which I will now comment on.
The first would be its commitment to a system of public and universal care, which improves the equitable aspect of access. Recently, rationing has been observed at the entrance to these services, as well as wide local variations in quality and coverage. And over the years, the appearance of inefficiencies in the operation of these public services has led to an opening up to private services.
In the Swedish case, the defence of a very humane model or philosophy of care called "person-centred care", of which they are pioneers, based on the freedom and dignity of people, is noteworthy
The second is the delegation of the management and production of the services in the hands of the Local Bodies, facilitating direct and close contact between the Administration and the users. This has created the ideal conditions to make possible the objective of promoting independent living by the elderly, and for which they are especially known in Sweden.
The third is that the defence of the active and autonomous life of the elderly has been achieved mainly through the development of home care services, and more recently through the extension of new technologies to facilitate the care of the elderly in their homes.
Their long experience in the provision of residential care has led them to understand the socially and politically desired limits of this coverage, and they are currently reducing this coverage, and expanding other intermediate services. In other words, they are betting on a diversification and modernization of services, which denotes a broad and flexible vision of the future.
The fourth would be the defence of a very humane model or philosophy of care called "person-centred care" of which they are pioneers, and which is based on the freedom and dignity of people. This perspective of care affects the designs, methods and organisation of work in the different services, and generates broad social satisfaction.
I would also highlight that their management, being local, facilitates the speed of response to the user, as well as their coordination efforts with the health services, despite being provided at a regional level.
Finally, Sweden is one of the countries that allocates more public money to finance care for the elderly, and this financial availability is highly desired by other countries. However, its challenges are similar to those of other countries: to reduce costs, increase effectiveness, control and increase the quality of services provided by private or public entities, find qualified personnel, and seek a balance between the care to be provided by family, market and State.
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Professor Sundström's thought-provoking article offers another opportunity for reflection on the welfare model and in particular the situation of services and support for older people in Sweden and Spain.
Without entering into a parallel analysis of the historical evolution, frankly revealing for a better understanding of our different realities today, it is clear that the implementation and development of a public system of social services in Spain is still recent, dating back to the early 1980s, as a consequence of the end of the dictatorship and the arrival of constitutional democracy.
At that time, the world of care for people who needed support was resolved in the area of privacy, in the domestic space, almost exclusively by women. The resources for the elderly were still very close to the concept of charity and assistance, destined to people without resources of any kind. Voluntary action was directly associated with the Church, which in turn was mostly akin to the dictatorship.
In this scenario, a system of social services began to develop timidly, based mainly on the construction of large capacity residences, aimed at independent people who suffered from multiple socioeconomic deficiencies. A classic institutional model whose consequences we still suffer from. Home services were poorly developed, dedicated to cleaning tasks, reaching a low coverage rate of 0.48 in 1990. The associative movement and voluntary action were practically non-existent.
This situation has changed significantly over the last two decades, so that our coverage rates are close to the European average. The approval of the Law for the Promotion of Personal Autonomy and Care for Dependency Situations (2006), despite its deficient development, represents a major advance in the conception and culture of care.
But we still have not resolved many of the challenges that are raised in this suggestive article by Professor Sundström, precisely in aspects that can help us a lot to advance in the construction of a more solid care model.
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The low value that the Spanish population places on the tax system. How can we achieve greater social awareness of its role in building a welfare society?
Unlike what happens in Sweden, it is important to point out that the Spanish population attaches little value to the tax system. How can we achieve greater social awareness of its role in building a welfare society?
- The competence framework of the social services, both the domiciliary services and any type of residential accommodation, is becoming a pending subject. From the outset, the advocates of comprehensive care have had to deal with a system that depends on several public administrations, with the attendant coordination problems.
- Associationism is still fragile. We cannot forget that today's older people were educated in a society dominated by the dictatorship in which any kind of initiative of participation or association was forbidden.
- Something similar happens with voluntary action in Spain. It does not have enough recognition in professional fields. Consequently, there is a certain distrust among the population towards their initiatives.
- The clear trend towards universal access to public services; a Nordic tradition admired and desired that we are still far from achieving in our social services. Our investment in social services is notoriously low.
- The practice of people's right to autonomy, even when they need help. We would have to go back to our own idiosyncrasies and religious traditions to understand why this is such a scarce practice in Spain.
- The value of evaluation of the plans and strategies that are implemented. We do not have a "self-critical culture".
As we raised decades ago, we are faced with insurmountable cultural differences that show a certain polarity in our evolution, or is it just a matter of time before we progressively unify positions and idiosyncrasies?
Despite the shortcomings pointed out by Professor Sundström, the Swedish model of long-term care is an example for Spain from which we can draw lessons of the utmost importance for the difficult time we are experiencing.
Respuestas de los usuarios