BACKGROUND: The concept of deinstitutionalization started in the 1960s in the US to describe closing down or reducing the number of beds in mental hospitals. The same process has been going on in many countries but with different names and in various forms. In Europe, countries like Italy prescribed by law an immediate ban on admitting patients to mental hospitals while in some other European countries psychiatric care was reorganized into a sectorized psychiatry characterized by open psychiatric care. This sectorization has not been studied to the same extent as the radical closures of mental hospitals, even though it entailed major changes in the organization of care. The deinstitutionalization in Sweden is connected to the sectorization of psychiatric care, a protracted process taking years to implement.

METHODS: Older people, with their first admission to psychiatric care before or after the sectorization process, were followed using three different time metrics: (a) year of first entry into a mental hospital, (b) total years of institutionalization, and (c) changes resulting from aging. Data from surveys in 1996, 2001, 2006, and 2011 were used, together with National registers.

RESULTS: Examination of date of first institutionalization and length of stay indicates a clear break in 1985, the year when the sectorization was completed in the studied municipality. The results show that the two groups, despite belonging to the same age group (birthyears 1910-1951, mean birthyear 1937), represented two different patient generations. The pre-sectorization group was institutionalized at an earlier age and accumulated more time in institutions than the post-sectorization group. Compared to the post-sectorization group, the pre-sectorization group were found to be disadvantaged in that their level of functioning was lower, and they had more unmet needs, even when diagnosis was taken into account.

CONCLUSIONS: Sectorization is an important divide which explains differences in two groups of the same age but with different institutional history: "modern" and "traditional" patient generations that received radically different types of care. The results indicate that the sectorization of psychiatric care might be as important as the Mental Health Care Reform of 1995, although a relatively quiet revolution.

Introduction: The aging population is often considered as a threat that will deplete family and societal resources. Yet older people may be a resource, giving support and care to their family. The aim of this study is to analyze patterns of giving and receiving support by the oldest old with their family. Method: Data were used from the OCTO2- study, a Swedish population-based sample of 171 women and 156 men, 75–90  years. Respondents completed the Intergenerational Support Index to examine patterns of receiving and giving care and support and factors associated with support exchanges. Results: Results showed that the oldest old gave as much support as they received within the family. Most of the older persons receiving formal help from the community (79%) continued giving support to family. The most common types of support given and received within the family were emotional (89% given, 90% received) and practical (44% given, 46% received). Older persons gave more financial support (26%) than they received (2%). Age, gender, functioning in daily life activities and satisfaction with life were associated with giving different types of family support. Conclusion: Old-old people in Sweden are not just consumers of care, but are involved in reciprocal patterns as receivers and providers of care and support. It is not a simple opposition between being a giver and receiver of informal support simultaneously, but more knowledge is needed about the complex interplay between various form of care and support.

Objectives

As part of the process of de-institutionalization in the Swedish mental healthcare system, a reform was implemented in 1995, moving the responsibility for services and social support for people with severe mental illness (SMI) from the regional level to the municipalities. In many ways, older people with SMI were neglected in this changing landscape of psychiatric care. The aim of this study is to investigate functional levels, living conditions, need of support in daily life, and how these aspects changed over time for older people with SMI.

Methods

In this study we used data from surveys collected in 1996, 2001, 2006, and 2011 and data from national registers. A group of older adults with severe persistent mental illness (SMI-O:P) was identified and divided into those who experienced shorter stays (less than 3 years) in a mental hospital (N = 118) and longer stays (N = 117).

Results

After correcting for longitudinal changes with age, the longer-stay group was more likely than the shorter-stay group to experience functional difficulties and as a result, were more likely to have experienced 're-institutionalization' to another care setting, as opposed to living independently.

Conclusions

The length of mental illness hospitalization has significant effects on the living conditions of older people with SMI and their ability to participate in social life.

This study examines what support services are offered to informal caregivers and whether the support is aimed directly or indirectly at the caters. Data were collected by means of two mail questionnaires in a Swedish county. The first questionnaire was aimed at each municipality in the region. The second questionnaire was sent to a random sample of 284 voluntary organizations in the region. Only the municipalities proved to have relief services, day care centers and two forms of payment for carers. The voluntary organizations' support for carers was focused on support groups and training as well as services for elderly care recipients. The results indicated that the support services for carers were both direct and indirect and that the municipalities and the voluntary organizations largely offer different kinds of support.

This study describes and analyses the kinds of support received by different categories of informal carers, and the kinds of help that care recipients receive in addition to that provided by various categories of carers. Data were collected in a Swedish county in 2000, by means of telephone interviews. The net sample consisted of 2,697 individuals 18-84 years old, and the response rate was 61%. The results showed that relatively few carers in any care category received any kind of support aimed directly at them as carers. The most widespread form of support received by providers of personal care was relief services. Those most likely to be receiving care from the public care system were people also receiving personal care from an informal caregiver. Nevertheless, the majority of those receiving personal care from an informal carer did not receive any help from the public care system or from voluntary organizations or for-profit agencies. These results indicate that social policy and social work need to clarify the aims of the services they provide. They also need to take the needs of both caregivers and recipients into account when discussing support systems.

This study describes and analyses the types of informal care provided in Sweden and whether it is possible to distinguish different types of carers. Data were collected in a Swedish county in 2000, by means of telephone interviews. The net sample consisted of 2,697 individuals 18–84 years old, and the response rate was 61 per cent. The results showed that there were large differences in the numbers of male and female carers when the data were divided into a typology of care categories based on different caring tasks. Women were much more likely than men to be involved at the ‘heavy end’ of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely to provide some kind of practical help for a mother or a neighbour/friend. Even though the Swedish welfare state has been described as universal and characterised by an extensive system of benefits and services intended to cover the entire population, the results here indicate that informal care plays an important role and that the gender role patterns are similar to those observed in other types of welfare state. When discussing support systems it is important for social policy to develop programmes that take into account the support needs of both caregivers and care recipients, and not to see their needs in isolation from the social care system as a whole

This study examines the support services offered to informal caregivers, whether directly or indirectly, in Sweden over the period of a special investment initiative between 1999 and 2001. Data were collected in a Swedish county using two separate mail questionnaires in 1999 and 2001. The first questionnaire was addressed to each municipality in the region. The second questionnaire was sent to a random sample of voluntary organizations in the area. The findings showed that only the municipalities provided direct forms of relief service, day care and financial support. The voluntary organizations’ support for carers focused on support groups and training as well as services for older care users themselves. There was a significant increase between 1999 and 2001 in the number of municipalities providing information material and training for carers and using professional caregiver consultants. On the one hand, the Swedish public social care system appears to be following the international pattern in paying more attention to informal caregivers and investing in support services for them. On the other hand the findings did not show any growth in support provided by the voluntary organizations. Here Swedish welfare is dissimilar to other European countries, where it is increasingly common for voluntary organizations to play an important role as providers of support for carers.

This chapter studies patterns of informal helping in Scandinavia. Previous research has assumed that due to the extensive welfare state, informal helping has been less important in the Scandinavian countries. However, the results presented in this chapter show that informal helping is widespread in these countries. Furthermore, earlier studies on this topic have taken either a ‘welfare state/care culture’ perspective or a ‘civil society’ perspective as a point of departure. We argue that both perspectives are relevant, but they point to different forms of informal help in terms of who are the recipients of help. Whereas help provided to relatives may be viewed as a ‘family duty’ and linked to a certain care culture, help provided to non-relatives is arguably more comparable to behaviour driven by altruism and therefore linked to civic engagement. The results suggest that the latter perspective is more predominant in Denmark than in Norway and Sweden. In Denmark, informal help provided to non-relatives is associated with volunteering and social trust. The findings call for further theorising on the relationship between informal help, the welfare state and civil society.

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal helpgiving and volunteering, a group that has been labeled “super helpers” or “doers” in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens.

This article reports on an analysis of informal help and caregiving in Sweden with, for the first time, a focus on patterns of change over 17 years regarding scope, type of caregivers and the recipients of help. The discussion is based on results from a national survey repeated four times between 1992 and 2009. In the 1990s, the figures were stable, but from the late 1990s to 2009, there seems to have been a dramatic increase in the extent of informal help giving. Concerning types of helpers, the patterns implied involvement not only from family members, but also from other types of helpers. Two interpretative perspectives were used in the analysis: the first from recent welfare state changes and the substitution argument; the second from the present debate on civil society and its possible and changing role. These perspectives represent two partly complementary approaches to the understanding of the dynamics of informal involvement in contemporary Swedish society.

This article analyses informal caregiving and volunteering in organizations over 17 years in Sweden, with a focus on links between these two forms of unpaid activities. The discussion is based on results from a national survey that was repeated four times in the period 1992–2009. Links were found between the different types of activities. In all four studies a substantial group of the population was involved both in informal caregiving and volunteering. This group of ‘active citizens’ are commonly also engaged in informal social networks. This ‘double active’ group had increased over time and they provide a substantial amount of hours of involvement. Patterns outlined in this article demonstrate that unpaid activities represent a multifaceted phenomenon, and that the boundaries between informal caregiving and volunteering as forms of engagement may be more fluid than has previously been acknowledged. The results challenge the literature in which informal caregiving is viewed as a major obstacle to volunteering. At the same time, however, informal caregiving in general was found to be increasing. There might be reasons to be cautious about the possible risk that too much pressure on citizens for informal caregiving might jeopardize the type of double involvement that is outlined in this article.

This article analyses informal help and caregiving in Sweden with a focus on the scope and trends of change over time. The discussion is based on the results of three national surveys and of one survey conducted in the county of Stockholm. The results indicated that informal help and caregiving was common throughout the period under study. In the 1990s, the figures were fairly stable, while from the late 1990s to 2005 there seems to have been a dramatic increase in the prevalence of such support. Two interpretative perspectives are used to discuss this pattern. One locates its point of departure in recent welfare state changes and in the substitution argument, according to which cuts in welfare services put more pressure on people to provide informal help and care. The second perspective relates to the present debate on civil society and to its possible role in contemporary society. According to the civil society perspective, an increase in the prevalence of informal help and caregiving might be interpreted as an expression of growing civic involvement ‘in its own right’, without a straightforward and simple relationship to changes in the welfare state. It is argued in the article that the two frames of interpretation should not be viewed as mutually exclusive, but rather that they represent two partly complementary approaches to the understanding of the complex dynamics of unpaid work in contemporary Swedish society.

Anhörigomsorg är del av en komplex väv med olika nivåer, individuella, familjemässiga och övergripande samhälleliga, där åtminstone de senare har begränsade resurser. Denna rapport presenterar och diskuterar kunskapsläget inom svensk och internationell forskning om anhöriga till äldre. Vi sätter den svenska anhörigomsorgen i ett större sammanhang genom resonemang om demografiska förutsättningar, historiska tillbakablickar och internationella utblickar. Nutid belyses med aktuella undersökningar och vi tror att framtiden kan klaras tack vare den allt större överlappning vi redan ser mellan många olika former av hjälp, service, omsorg och vård. Vi ställer frågan om dessa mönster kanske förbises i de ofta dystra, rent demografisk-ekonomiska framskrivningarna. Rapporten redovisar många svenska undersökningar av anhörigomsorg, både i befolkningen i stort och bland äldre. Det förefaller klart att det skett en faktisk ökning av anhörigomsorgens omfattning från 1990-talet och början av 2000- talet, något som flera studier visar. Resultat från en europeisk undersökning med gemensamma frågor och svarsalternativ tyder på att anhörigomsorg är vanligare i Nordeuropa än i Sydeuropa vilket nog strider mot gängse föreställningar. Kanske är det i Norden vanligare att vara hjälpgivare men inte med lika omfattande engagemang eller lika länge och man bor sällan tillsammans. Då fördelas nog omsorgen på fler händer. I Sverige angav mindre än 1 procent att de gav omsorg på heltid, i Spanien 5 procent. Sammantaget har, i Sverige liksom i övriga Europa, mer än 4 av 10 i befolkningen en aktuell eller tidigare personlig erfarenhet av att ge omsorg, och på befolkningsnivå är anhörigomsorgen klart större än den offentliga. De flesta svenska studier visar att det är ungefär lika vanligt bland kvinnor och män att vara givare av anhörigomsorg. Kvinnor ger dock oftare personlig omvårdnad och de ger fler timmar omsorg än männen. De flesta omsorgsgivare ger ganska få hjälptimmar, men timinsatserna ökar med stigande ålder och är högst bland de äldsta. I genomsnitt ger omkring 30 procent av omsorgsgivarna daglig hjälp, men den andelen stiger till nästan 40 procent för anhörigvårdare i 65–80 årsåldern och till 80 procent för dem som är ännu äldre. Äldre utgör således 30 procent av alla som ger omsorg, oftast till andra äldre, men utför ungefär 4 av 10 omsorgstimmar. Äldre personer är inte bara mottagare av omsorg utan minst lika ofta också givare. De flesta givare av anhörigomsorg ger ”lättare” former av insatser (skjutsning, passning, tillsyn etc.), insatser som många gånger säkerligen är viktiga och kan vara avgörande för mottagaren. Det är viktigt att se det stora spektret av anhörigomsorg och att det också finns grupper av anhöriga (ofta äldre personer) som gör omfattande insatser som kan påverka såväl egen hälsa som arbetsliv. Vid små hjälpbehov – fallet för de flesta – får man lite hjälp främst av anhöriga, vid större behov mer hjälp och då av både anhöriga och av kommunen. Delat ansvar är vanligt och även vad omsorgsgivare och mottagare önskar. Få önskar bära ansvaret ensamma och få önskar att ansvaret helt ligger på det offentliga. Historiskt utgör barn och andra anhöriga en viss trygghet på ålderdomen, något som inte tillhör det förflutna, utan snarare kommer att få större betydelse framöver. Anledningen är demografisk: allt fler har nära anhöriga i form av en egen familj. Familjens relativa betydelse har ökat, inte minskat som man ibland föreställer sig. Detta accentueras av att den offentliga omsorgen visserligen är väl utbyggd i Sverige, men tycks ha nått gränsen för vad den kan uträtta, praktiskt och finansiellt. Anhörigomsorgen har även socialpolitiska aspekter. Den som är eller varit anhörigvårdare vill helst inte själv vara mottagare av omfattande anhörigvård, utan hellre få huvuddelen av omsorgen från det offentliga. Man kan nog förutse ännu strängare ransonering av offentliga tjänster i framtiden, där anhöriga och marknadsbaserade tjänster är alternativen, möjligen tillsammans med växande insatser från ideella organisationer.

Summary

• This article describes and analyses public support received by unpaid carers in Sweden

• Three types of carers were identified

•  Very few carers helping someone living in a different household – the large majority of carers – received or desired support aimed directly at them

• Carers mostly wanted public services for the cared-for person

• Despite legislation in 2009 mandating municipalities to offer support to carers, very few of them know about this law

•  There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support services for themselves

•  Social policy needs to clarify the aims of the support provided and to take the needs of both carers and cared-for persons into account.

This article describes and analyses public support for Swedish unpaid carers, now mandated by law, and also the support that they desire, using surveys conducted in 2008, 2009, and later. Few carers helping someone in a different household – the large majority of the carers – received any support aimed directly at them, such as access to support groups, training, relief service, or financial support. Yet, most carers did not desire any support for themselves. They mostly wanted public services for the cared-for person, all of which may also indirectly support carers. Intra-household carers – about a tenth of all carers – have vastly larger care commitments than other carers. Some of them desire support for themselves, usually relief services of financial support. Three out of 10 of these carers used any public support, despite the new (2009) legislation that only a minority of carers know about. There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support for themselves. The relationship between carers and the state is unclear in Sweden and this reflects on the aims and the forms of support. Stereotypes about ‘typical’ carers may have impeded adequate forms of support.

Många äldre är i högsta grad aktiva medborgare, inte bara mottagare av vård och omsorg. Även engagemang i ideella organisationer är vanligt, också i internationell jämförelse. Vid sidan av frivilliginsatser i organiserad och oorganiserad form, finns insatser som bestås av anhöriga, yngre och äldre, och totalt sett större än all offentlig omsorg sammantagen. Ofta överlappar olika slag av hjälp och omsorg. Många insatser av frivilliga och anhöriga är "små", vilket ingalunda betyder att de är oviktiga - de kan vara helt avgörande. Fakta och exempel ges i denna skrift med sinne för vardagslivets vanlighet och som tar upp frågor viktiga för den framtida äldreomsorgen.

This article analyzes the panorama of care provision in Sweden from the informal carers' perspective. We consider informal care, publicly financed services, for-profit agencies and voluntary organizations, using a survey conducted in 2009. Most cared-for persons with minor needs living in a separate household are helped also by others, but only a tenth use public services or other providers. About half of cared-for persons with major needs living in a separate household receive care also from other informal carers as well as public services. Only 1 in 10 of them relied on no one else beyond the carer interviewed. Among intra household carers—a minority of all persons cared for—it was common that the carer was alone in his/her commitment, without any contributions from public services or others. For the large majority of informal carers it is not a solitary undertaking as the commitment is often shared with family members and others and/or public services. The results suggest that ideal types about complementarity and substitution may understate the complex interplay between informal care and the public services (and potential other providers). The findings may suggest a need for more empirical research about ‘Care Cultures’ and expose simplistic representations of welfare societies; informal care plays a major—and increasing—role also in Sweden, a country with extensive public services.

In Sweden, a country with one of the highest public spending on long term care, there is also extensive informal care, i.e. unpaid care by family, friends, or neighbours. In this article, we explore the spectrum of informal caring using data from a nationally representative survey of caregivers in the Swedish population. We describe three different caregiver profiles and analyse them in relation to their panorama of care, i.e. the extent to which caring is shared with other formal- and informal co-carers. The first profile, the co-habitant family carer, consists of caregivers providing help for someone in the same household with special care needs, and were mostly alone in intensive caregiving. The second profile, persons in the care network, consists of caregivers providing help to someone with care needs in another household. They have a network of both informal and formal co-carers. Finally, the helpful fellowman consists of caregivers providing help for someone without special needs in another household. In developing relevant carer support, it is important to acknowledge that caregivers are not a homogenous group. Thus, to fulfil national ambitions to support carers across the board, policy and practice need to have a diverse group of carers in mind.

Ingress: Ädre personer med psykisk funktionsnedsättning är till viss del osynliggjorda. En aktuell studie pekar på behovet av att både kommuner och frivilliga organisationer behöver förbättra sitt arbete med att identifiera och synliggöra denna grupp och deras behov av hjälp och stöd.

Older people ageing with severe mental illness (SMI) usually fall in between mental health care and old age care services. The role of informal care in filling this gap is recognized. The role of other welfare providers, such as voluntary organizations, is unclear. The aim of this article is to analyze and discuss local voluntary organizations' ability to recognize and respond to the needs of older people with SMI in the community.

11 local organizations focusing on mental illness, social care or old age were identified in a mid-sized Swedish city. Seven voluntary organizations participated in the study.

Our analysis revealed three overarching themes: 'Age as a non-issue?', 'Public and voluntary sector (non)links' and 'organizational vulnerabilities'. Our results show that older people with SMI are to some extent also invisible in the voluntary sector. We were also able to discern differences in the 'we-for-us' organizations that provide support for their own members with SMI, and 'we-for-them' organizations that provide help to a broader group.

Overall, older people with SMI remain a relatively invisible as a group for the voluntary organizations. We discuss these findings in relation to the specificity of the group and welfare contexts of voluntary work in communities.

Den här rapporten är en resa genom anhörigkonsulenters och biståndshandläggares erfarenheter, uppfattningar och förutsättningar för att bedriva anhörigstöd och vilka former av stöd som erbjuds anhöriga.

Studien baseras på en webbenkät utskickad till anhörigkonsulenter och biståndshandläggare i Jönköpings län och Stockholms län och vill bidra till en fördjupad kunskap och förståelse för den komplexitet som yrkesrollerna hanterar i sitt dagliga arbete med anhörigstöd.

Få studier har hittills gjorts ur det här perspektivet. Att sätta fokus på anhörigkonsulenterna är givet, men biståndshandläggarna möter också många anhöriga i sin yrkesutövning. Tillsammans ger de oss en bredare bild av de förutsättningar man har för att bedriva arbetet med anhörigstöd, vilka stödformer man erbjuder och vilka arbetsformer man använt under covid-19-pandemin. Vi får också en bild av i vilken utsträckning man når de anhöriga och i vilken omfattning man samarbetar med andra aktörer kring anhörigstöd. I studien har vi också ställt frågorom synen på vad socialtjänstens anhörigstöd kan och bör leda till.

Resultaten i studien är många och ur dem har vi identifierat fem utvecklingsområden som synliggör möjliga riktningar för kommunerna i arbetet med att utveckla anhörigstödet. På så sätt önskar vi bidra till att stärka det viktiga arbete som anhörigkonsulenter och biståndshandläggare gör dagligen för att underlätta vardagen för alla anhöriga de möter.

The article illuminates and discusses the realism of policy-makers' goals to increase involvement of volunteers and informal caregivers in long-term care services in Norway. Drawing on multiple data sources, the article investigates how commonplace volunteering and informal care are in long-term care, and it explores challenges experienced in collaboration between formal caregivers and volunteers and informal caregivers. The results show that only 4.4 percent of the Norwegian population carry out unpaid, voluntary work in long-term care. Twenty percent regularly provide informal care to someone with special care needs. Knowledge/information gaps and lacking coordination are common collaboration challenges between formal caregivers and volunteers/informal caregivers. The limitations identified in the current collaboration environment should be used actively by both policy makers and the practice field to critically assess goals and strategies for involvement and improving collaboration practices.

We estimate how much caregiving men and women respectively do, and how much of the caregiving is done by older (65+) and younger persons, inside their household and for other households, in Spain and in Sweden. To assess this, we use self-reported hours of caregiving from two national surveys about caregiving, performed in 2014 (Spain, N = 2003; Sweden, N = 1193). Spain and Sweden have dissimilar household structures, and different social services for older (65+) persons. Caregivers, on average, provide many more hours of care in Spain than in Sweden. Women provide about 58% of all hours of caregiving, in Spain in all age groups, in Sweden only among younger caregivers. The reason is the dominance of partner caregivers among older Swedes, with older men and women providing equal hours of care. Family caregiving inside the household is more extensive in the more complex Spanish households than in Swedish households. Family care between households prevails in Sweden, where the large majority of older persons live with a partner only, or alone. This is increasingly common in Spain, although it remains at a lower level. We estimate that older persons provide between 22% and 33% of all hours of caregiving in Spain, and between 41% and 49% in Sweden. Patterns of caregiving appear to be determined mainly by demography and household structure.

Social service provision in Europe has increasingly incorporated informal carers. Consequently, these carers are now included within the scope of all social workers, including care managers. Most support for carers is indirect support, where opportunities for respite are channelled through the care receiver’s needs assessment. This approach highlights the unique role of care managers providing carer support as they balance their public task directed towards clients with the concurrent policy-driven expectation to support carers. The aim of this article is to explore how care managers, as street-level bureaucrats, ‘make’ carer support policy on the ground. Using systematic text condensation of 10 qualitative interviews with care managers in Sweden, we present three themes to understand care managers’ experiences. Care managers work ‘Hand-in-hand’ and ‘hands on’ with carers, carers are within, yet outside one’s scope of work, and there are possibilities and practices towards a carer perspective. Following Lipsky’s dictum that street-level bureaucrats’ actions effectively ‘become’ the public policy they carry out, our results highlight care managers’ possibilities and challenges in shaping what direct and indirect carer support looks like on the ground.