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The European voice for informal carers


Towards carer-friendly societies
Demographic background

In the period 2019-2050 the share of 65+ in the Swedish population is expected to grow from 19.9% to 21.8% (EU-28: 20%-28.5%), with most of the growth happening before 2032. At the same time the share of people 85+ will grow from 2.6% to 4.3% (EU-28: 2.7%-6.1%).

Over the same period, the old age dependency ratio measured as 65+ as percentage of the 15-64-year olds will rise from 31.7% (EU-28: 30.5%) to 45.9% (EU-28: 55.3%).

Life expectancy for men and women at age 65 is projected to rise from 19.2/21.5 years (EU-28: 18.1/21.4) in 2017 to 22.7/25.7 years (EU-28: 22.4/25.6) in 2060. From 2013 to 2017 healthy life expectancy for men and women rose by 2.5 and 2 years, respectively (EU 28: 1.3 and 1.6 years).

Under an assumption of no policy change the Ageing Report scenario suggests that public expenditure as share of GDP would rise from 3.2% to 5.3% (EU-27: 1.6%-3.1%) by 2070. The impact of a progressive shift from the informal to the formal sector of care in France would entail an estimated increase by 90% in the share of GDP devoted to public expenditure on long-term care (128% on average for the EU27).

Current Long-term care provision

Sweden has a comprehensive public long-term care (LTC) system for older people. In 2015, the number of LTC beds per 1,000 of the population aged 65 and over was higher than the OECD average. Expenditure on LTC was 2.9% of GDP in 2014 (Eurostat), which was among the highest in the EU. Services are highly subsidised in Sweden; users pay only 4 or 5% of the cost. Services are needs-based rather than means-tested.

The Swedish LTC system is decentralised. The responsibility for the long-term care (LTC) of older people is divided between three governmental levels. At the national level, parliament and the government set out policy aims and directives by means of legislation and economic incentives/steering measures. The 21 county councils and regions are responsible for health and medical care. The 290 municipalities are responsible for social care, i.e. institutional care and home help. Home-help services can be complemented by home health care services. The municipalities vary considerably in population and character and thus the conditions for managing the municipal tasks differ.

All citizens are, if needed, eligible for health and social care services. Access to social care is based on a needs-assessment, as opposed to being means-tested. However, there are no national regulations on eligibility. Eligibility criteria, service levels, and the range of services provided (for both home help and institutional care) are decided locally. Cash benefits are also decided locally. Hence, an evaluation of eligibility criteria for LTC services and benefits is difficult to make.

This decentralised structure gives rise to a number of important problems.

First and foremost, there are no national regulations on eligibility: local authorities decide on the service levels, eligibility criteria and range of services provided for home help and institutional care. Cash benefits (which play a very marginal role in the Swedish LTC system) for informal carers are also decided upon locally and are not provided everywhere. In the national plan on quality in health and social care of older people (SOU 2017:21), the investigator suggests that the National Board of Health and Welfare (NBHW) should map out differences between municipalities in their guidelines and practice in granting access to institutional care, and the causes of these differences.

The ‘ageing in place’ policy has led to a gradual downsizing of institutional resources

More recently, an ‘ageing in place’ policy has dominated the organisation and performance of LTC in Sweden. This policy has led to a gradual downsizing of institutional resources. Since the early 2000s, 30% of the beds in municipal institutional care have been closed. The downsizing of municipal institutional care has in practice lifted the threshold so that only the most dependent older people can access institutional care.

Another development in Swedish LTC is a strong marketisation trend (i.e. private for-profit provision of publicly funded care), including increased competition, freedom of choice and diversity of providers.

Integrated care is a national policy goal to avoid fragmentation and improve efficiency in care provision for older people by introducing coherent and coordinated LTC services, both within the care systems and between health and social care. Simultaneously, there is a striving for more competition under the umbrella of freedom of choice and diversity. The official goals of (on the one hand) equality and LTC systems of integrated care, and (on the other) freedom of choice, results in a political dilemma involving conflicting goals. At the political level, there is a need to prioritise.

Carer-friendly policy environment

Number of carers

Until recently, population-based data on informal caring has not been available. In 2012, the National Board of Health and welfare was commissioned by the government to carry out a study on informal care to persons with disabilities and older people, covering the whole country and for the adult population. The study showed that 18% of the 18+ population provides help, support and care on a regular basis, corresponding to over 1.3 million people overall.

More than 400,000 people (6%) provide daily help, more than 600,000 (8%) weekly, and some 300,000 people (4%) provide help at least once a month. Those aged 45 to 64 years are most likely to be carers: 24% of those in this age range identified themselves as such (which represents some 580,000 people). Older people (65+) are also frequent carers, with 19% (just over 325,000 in the population) saying they provided care. Older carers provide more intensive levels of care than their younger counterparts.

Access to information and advice

Direct support for carers consists in services and care provided to the carer directly (e.g., information and advice, counselling, support groups, in-home respite) while indirect support is targeted at the cared for person (home help, institutional care, day care, short-term respite care, etc.).

Direct support is offered by all municipalities as a general service, and not based on a needs assessment. The intensity, content and quality of the provided support can, however, vary between the municipalities.

All persons in Sweden with care needs, irrespective of age and type of disabilities, are covered by the Social Services Act (1982). The Act gives the 290 municipalities the ultimate responsibility for ensuring that all residents in the municipality obtain the support and help they need. Indirect support is accessible after a needs assessment. The main service is home help, which includes help with daily activities, e.g. shopping, cooking, cleaning and laundry, as well as personal care such as help with bathing, going to the toilet, getting dressed and getting in and out of bed. There is also a comprehensive range of additional services, e.g. home health care, transport services, meals on wheels, security alarms, housing adaptations, assistive devices, etc.

Direct and indirect support complement and sometimes overlap each other. It is not unusual that the person cared for receives both home help and a carer respite service at the same time. Direct and indirect support is of course also provided by the health care services and many carers also receive

help from voluntary organizations. It is known that the priority of carers themselves is for high quality and accessible service and care for the person cared for: i.e. indirect support.

The Act on Support and Service for Persons with Certain Functional Impairments (LSS) sets out rights for persons with considerable and permanent functional impairments. Its ten measures for individualised special support and services are to provide such persons with good living conditions in the community, rather than institutional care (Clevnert & Johansson, 2007; National Board of Health and Welfare, 2009). Those covered by LSS are persons with:

  • Intellectual impairments, autism or conditions similar to autism.
  • Significant and permanent intellectual disabilities following brain damage in adulthood. The injury has to have occurred through physical violence or physical illness.
  • Other permanent physical or mental disabilities that are not due to normal ageing. The disabilities have to be so severe that they cause significant difficulties with daily living activities.

The measures available are:

  • Counselling and other personal expert support.
  • Personal assistance.
  • Companion service.
  • Contact person.
  • Relief service in the home.
  • Short-term stays away from home.
  • Short period of supervision for schoolchildren over 12 years of age.
  • Foster homes and special housing for children and young people.
  • Residential arrangements with special service for adults or other specially-adapted residential arrangements.
  • Daily activities.

Recognition and definition of carers

Informal care of dependent persons has not been included in Swedish family policy. Support policies for carers can be an integrated part of LTC policy, family policy or an add-on policy. The Social Services Act is a frame law legislation, with no definition of informal care/carers. The 2009 legislation (the amendment to the Social Services Act regarding support to informal carers) points towards a break from the traditional Swedish model and a revision of the existing social contract. But it is still an add-on policy, not integrated with other policies, such as pension and employment legislation. When announcing the 2009 amendment though, the government website used the phrase “legal rights to support for carers”. This gave an image, that the amendment was an entitlement to support. But the amendment gives carers the right to an assessment of their needs, no more no less.

Over the years, studies have repeatedly showed the crucial role of the family as carers of needy family members. Approximately two-thirds of all care for community-living older people is provided by informal carers, and the proportion of older people relying on family for care has increased over the years (Johansson & Sundström, 2006; National Board of Health and welfare, 2015; Sundström, Malmberg, & Johansson, 2006; Szebehely & Trydegård, 2012).

The lack of knowledge about the effects of present policies on support to informal carers was highlighted in the national plan on quality in health and social care of older people (SOU 2017:21). At national level, there is no up-to-date knowledge on whether support to informal carers is provided, to what extent information about available support reaches carers, or how carers value the support provided.

Access to respite care

The prime service in the municipality is home help. It includes help with daily activities, e.g. shopping, cooking, cleaning and laundry. It also includes personal care such as help with bathing, going to the toilet, getting dressed and in and out of bed. As well as home help, there is also a comprehensive range of municipal services for elderly people, such as transportation services, foot care, meals on wheels, security alarms, housing adaptations, assistive devices, etc.

Social inclusion of carers, access to education and employment

Cash benefits

There are two types of municipal cash benefits available for informal carers in Sweden. These are, however, not provided everywhere; each municipality may decide whether to provide this programme or not, and what the eligibility criteria, level of payment, etc. should be.

One allowance is attendance allowance (hemvårdsbidrag), which is given on top of services provided to the care recipient. This is a net cash payment given to the care recipient, to be used to pay for help from a family member. The level of reimbursement is at most about 4,000 SEK per month (~450). Eligibility is usually based on the assessed level of dependency or amount of caregiving, ‘measured’ as hours of help needed, or given, per week. Each municipality has the right do decide whether to provide this programme or not, eligibility criteria, level of payment, etc. There is no federal or state regulation.

The other benefit is carers allowance (anhöriganställning), which is actually not an allowance: the municipality employs a family member to do the care work. Carers allowance is taxed, and gives the same salary and similar social security as for home-help workers in the municipality’s own services. It is not possible for a person who is 65+ to be employed. This programme is also a matter for the local municipality to decide on, i.e. no national/federal regulation exists. The opportunity to be employed as carer by the municipality is far from being the preferred choice by municipalities. However, in certain circumstances, e.g. older people living in a remote area with a child in need of care living nearby, this can be a preferable arrangement for all involved. Another typical situation when the carers’ allowance is used is to provide services and care to older immigrants, where the municipality does not have care personnel with the necessary language and cultural skills and therefore employs a child, typically the daughter, living nearby.

Because data on municipal cash benefits ceased to be part of official statistics in Sweden in 2006, the most recent figures are from that year. The figures showed that 5,300 persons received attendance allowance and almost 1,900 received carers allowance. The number of persons receiving allowances is assumed to have decreased since then. It is important to stress that cash benefits play a very residual role in the Swedish LTC system, as services in kind are prioritised over cash benefits.

In addition, Parents can receive childcare allowance (vårdbidrag) if their child, up to the age of 19, needs special care or supervision for at least six months. The need for special care or supervision must be caused by the child’s illness or by the disability generating additional expenses. Full childcare allowance is 2.5 times the annual price base amount, which in 2014 was SEK 9,250 per month (~EUR 980). Childcare allowance is taxable and accrues pension credits (Swedish Social Insurance Agency, 2015b).

After the age of 19, individuals can become eligible for disability allowance (handikappersättning). This allowance is for the person cared for and not for the carer. A person who has been disabled for a considerable time and needs the time-consuming assistance of somebody else in order to manage at home or work, or has other significant additional expenses due to a disability, can receive disability allowance. The allowance can be granted from the age of 19 onwards, as long as the disability occurred before they turned 65.


Short-term and long-term care leave

The results of the above-mentioned study on informal care (National Board of Health and welfare, 2012) also showed that 8% of the carers (almost 70,000 persons in the population) reported they had reduced working hours due to caregiving duties, and 3% (29,000 persons) had stopped working for the same reason. Among all carers, women reduce their working hours (9%) due to caring more frequently than men (6%).

Awareness of the growing work-life balance problem is relatively new in Sweden. It was not until 2014 that the work-life balance issue was recognised in political discourse, when the government pointed out that more than ‘140,000 persons have quit their jobs or reduced their working hours to care for their aged parents’ (National Board of Health and Welfare, 2012; Szebehely, Ulmanen & Sand, 2014; Schön & Johansson, 2016).

Care leave, Benefit for care of closely related persons (Närståendepenning), is provided within the framework of the National Social Insurance Act. Those who forgo gainful employment (persons under 67 years of age) to take care of a severely ill, closely related person at home or at a care facility can receive this benefit. Severely ill refers to a life-threatening condition. The benefit (up to almost 80% of the sickness benefit) requires a doctor’s certificate, is taxable, and is paid for up to 100 days for each cared-for person

The employer is legally bound to hold the employee’s position open while they are on leave. To ‘take care’ of someone does not literally mean providing necessary care yourself. In other words, there is no presumption that the person receiving the payment should provide direct assistance or support to the terminally ill family member. Furthermore, there is no requirement that the person should be cared for at home. ‘Family’ has a broad definition and includes neighbours, friends and others who stand in for family members. The uptake of this form of leave in nevertheless low.

  • The 2018 Ageing Report, Economic and Budgetary Projections for the EU Member States (2016-2070), EC, 2018
  • ESPN Thematic Report on Challenges in Long-Term Care, Sweden, EC, 2018
  • CEQUA – Quality and cost-effectiveness in long-term care and dependency prevention – Country Report, Sweden, 2017
  • ESPN Thematic Report on work–life balance measures for persons of working age with dependent relatives, Sweden, 2016
  • Joint Report on Health Care and Long-Term Care Systems and Fiscal Sustainability, EC, 2016
  • Adequate social protection for long-term care needs in an ageing society, European Commission, 2014

Last Updated on January 17, 2023

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