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The European voice for informal carers

HUNGARY

Towards carer-friendly societies
Demographic background

Hungary is an ageing society. The demographic situation suggests considerable and growing care needs. In the period 2017 to 2070, the elderly population (65 and over) as % of total population is expected to rise from 19.6 (EU-27: 20.4%) to 29.6 (EU-27: 30.3%). Over the same period, the share of people aged 80 and over will rise from 4.5% (EU-27: 5.9%) to 12.2% (EU-27:13.2%). The growth rate of the oldest old is one of the most frequently used indicators of the expected future pressure on the long-term care (LTC) system.

The old-age dependency ratio – i.e., the share of the population aged 65 and above as a % of the population aged 20-64- is projected to rise from 32.2% (EU-27: 34.4%) to 57.4% (EU-27: 59.2%).

In 2070, the remaining life expectancy at the age of 65 for men and women is projected to reach respectively 21.9/25.4 years (EU-27: 23.5/26.8) compared to 14.8/18.7 years (EU-27: 18.4/22) in 2019. But while life expectancy is increasing, healthy life expectancy is not. The WHO figures on average healthy life expectancy at birth show a very negative picture for Hungary compared to other countries: only 62 years for men and 68 years for women (WHO 2006). The appearance of declining health in an early stage of the life cycle represents an es­pecially serious problem. Out of 29 countries (EU plus Norway and Switzerland) Hungary was ranked 25th. In the majority of Eastern European EU member states healthy life expectancy was between one and five years higher.

Demographics, though not favourable, still leave some time for preparation, as the demographic pressure on the demand side of LTC will grow significantly only in the late 2030s. On the other hand, long-term care expenditure as a share of the GDP is very low, less than 0.5% with lower levels found only in Estonia, Portugal and Greece among the OECD countries. The difference compared to the Netherlands and Sweden is especially striking (3.8% and 3.6%, respectively, in 2011).

Under an assumption of no policy change (base case scenario) the EU Ageing Report 2018 suggests that the projected public expenditure for long-term care as a share of GDP would rise from 0.8% to 1.6% in the period 2013-2060 (EU-27: 1.8%-3.6%). If all else remains unchanged, but there is a gradual increase in the share of the disabled population receiving formal care (shift to formal care scenario), then the expected spending in 2060 would be 1.9% of GDP.

The results of the projection confirm the view that the main problem of the LTC system in Hungary is unmet need – that is, quality of life in old age, rather than financial sustainability. Demography alone would explain a modest increase in future spending. It is adequacy of the system that would really cost.

Current Long-term care provision

Long-term care is a low-priority sphere of public policy in Hungary, receiving hardly any attention and igniting hardly any debates. Having disabled relatives or growing old and becoming dependent is more a family than a social affair. This is reflected in the limited availability of public long-term care services, scarcity of related research and lack of relevant data. The Fundamental Law (Constitution) of 2011 further ex­acerbated the trend of shifting the burden of care to the families by enjoining the duty of caregiving on them.

Hungary has no integrated long-term care system. Despite important steps taken recently toward integration, LTC still preserves a dual structure of health care and social care. The two branches have their own legislation, financing mechanisms and services. Cooperation between them is still weak, despite some minor improvements over the past few years, due to the concentration of health care and social affairs portfolios into one single authority, the Ministry of Human Resources (MHR).

The services provided in health care are nursing care in the nursing sections of hospitals and home nursing care. The three main types of services in social care are home care (including “meals on wheels” services), day care and residential care. The dominant provider of health care in LTC is the central government. The main providers of social care are local governments and churches (home care, day care and residential care) and the central government (residential care). All providers are financed by the central budget, based on the type and personnel requirements of the services; but they are expected to supplement the amount they get from their own resources and the contributions of recipients.

Until recently, the LTC system was still shaped by the organisational logic of central planning: centralisation, a preference for institutionalised care versus home-based care. However, this has recently changed with a shift towards more home care, which has increased rapidly in recent years, since the start of the economic crisis, in 2008. Whereas residential capacities grew by only 7% between 2008 and 2014 (and another 2 percentage points (p.p.) by 2016), by 2014 the number of home nursing care recipients had risen more than 1.4 times – and the recipients of home care had expanded more than 2.7 times compared to their respective levels in 2008. In order to contain this expansion, the government cut back on the per capita quota of government contribution in 2013 and tightened the eligibility criteria for new care recipients in 2015. This resulted in a drop in the number of recipients between 2014 and 2016. The expressed government preference, also introduced in the 2011 Constitution, for intergenerational responsibility within the family is indicative of further steps towards de-institutionalisation.

The LTC-system in Hungary mainly consists in benefits in kind: services (institutional or home care) are funded directly. There is only one type of cash benefit (the nursing fee or allowance), for those relatives with caring responsibility for a disabled family member.

Unit costs of both residential and home care are low in comparison with the EU. Public finances do not cover all the costs of service providers. In 2016, 42% of the operational costs of residential care centres were charged to clients or their families. The burden on the care recipient in other services is smaller. Only 5% of operational costs of day-care centres are collected from visitors; the corresponding rate for home care and ‘meals-on-wheels’ catering (combined) is 29%.

Home care is split into two distinct activities, provision of personal care (személyi gondozás) and social help (szociális segítés). The former mostly includes caring for personal hygiene; the latter includes tasks such as maintaining regular personal contact with the client and performing the most basic caring activities. The former requires special training, the latter does not. Need for care is established by a complex assessment process, which was recently revised. The criteria are national standards. Applicants are evaluated on the basis of 14 different activities. Abilities are measured on a scale of 0–4 and a formula translates the resulting values to care time. In 2015, this formula has been made tougher, leaving many potential applicants with fewer or no services. As a result of the raise of the threshold score in the system of rating the state of physical and mental health, home care has been pushed in the direction of nursing without providing the necessary resources, and simply leaving families to shoulder a new care task.

There is a gap between need and the public provision of long-term care. In 2016, 10.2% of the 65+ population received either home nursing care (2.3%), home care (5.2%) or residential care (2.7%). Even simpler and cheaper services, such as meal provision or alarm system-based assistance reached only 7.1% and 1.7%, respectively, of the reference population. The rest either have to pay full price for such services or get help from family (or else have the needs unmet).

The number of professional carers is declining, as wages in the social sector are the lowest in the entire national economy, which means that since 2010 the number of unfilled job vacancies has steadily increased (4.2% of jobs in the social and healthcare sectors were vacant in the fourth quarter of 2019, the highest of all sectors). Hungarian care workers tend to migrate to richer Member States, particularly Austria, Germany and the UK.

While Hungary exports labour, it also imports care workers mostly from the ethnic Hungarian communities of Romania and Ukraine. Indeed, shortages in the formal care system and the inadequacy of solely family-based solutions together with the social and economic constraints of home communities lead to the formation of an invisible care market: an important part of the LTC strategies of Hungarian families is the employment of – often undocumented- migrants (ethnic Hungarian coming from neighbouring Romania and Ukraine) as live-in carers. This is a largely informal and unregulated market, which is mostly out of sight of the authorities, unregulated and tax evading. Informality appears as advantageous for both the worker (with the drawback that she is excluded from health care and social insurance) and the person or family, who pays approximately 4-6 EUR/1000-1500 HUF per hour, which is only half what a formalized care/home nursing service would cost.

Thanks to the employment of migrants as live in carers, the upper and middle classes or those with savings have been able to ease the burden of long-term care and avoid institutional care.

It is evident that LTC remains inadequate, and either places the burden on families or else leaves the needs of older people unmet. When resources allow – or when other policy targets correspond with the interests of the LTC sector – services improve. For instance, the boom in home care has been seen by experts more as an effort to create jobs and at the same time achieve a collateral improvement in the quality of life of the elderly, rather than as a proper social investment.

Since long-term care is still on its way to becoming a separate field of social protection, the attitude of the authorities is still that of the helper, rather than the investor. Government helps out families and individuals as much as it can, but it does not consider LTC as a social investment.

 

The impact on carers

In general, long-term care is a backwater issue in Hungary, barely registering public attention. Within this marginal field, the burden of caring obligations on affected families attracts even less attention. Neither the national income lost in the provision of care by family members themselves nor the impact of such efforts on their well-being is assessed.

The findings of qualitative research on informal carers based on 18 in-depth interviews by the HCSOM Centre of Methodology in 2011 show the negative effects of caregiving on the carer. The majority of informal carers in the sample lived far away from their relatives (even in the same town) and very often had to provide intensive care even if their relatives received care in the public sector. The need to leave the workplace in case of an emergency and then having to work overtime to make up for time spent away from the job caused stress for almost all of them, producing somatic symptoms in many cases, hastening the deterioration of their own health, and mak­ing them potential care-receivers.

Similarly, a recent study (Baji 2019) found carers to spend an average of 27.6 h per week on informal care in Hungary. This corresponds to 69% of a usual 40-h workweek (in a paid job). As a large majority of carers were working or studying, these findings suggest that care hours substantially reduced leisure time. Moreover, a majority of carers did not live together with the care recipient. Hence, they had to travel regularly to provide care, which took substantial amounts of time as well. In about two-thirds of the cases, care lasted for more than 1 year, indicating a longstanding strain on involved carers.

Caring obligations can create obstacles to taking up a job, particularly among women. 20% of inactive Hungarian women between the ages of 15 and 64 gave the obligations of looking after children or incapacitated adults as the main reason for not seeking a job. This is higher than in the EU as a whole, and much higher than among men.

In Hungary, according to HCSO statistics from 2012, 30,550 people over 50 years of age had giv­en up work as a result of family and care obliga­tions. 26,100 of these (74%) were women (HCSO, 2013). This is not simply a problem in terms of increased poverty at the individual fami­ly level, it also negatively affects the entire econo­my. It contributes to the existing labour shortage, and goes against the employment objectives of the Europe 2020 strategy.

More attention paid to informal care in research, policy and clinical practice remains warranted. The fact that this care is often unpaid does not mean it is free. It can come at the high price of sacrificing resources, time, well-being and health and is of great value to patients and society.

Carer-friendly policy environment

Number of carers

Estimates of the prevalence of informal care in the general population show a substantial variation across different data sources. For example, OECD Health at Glance 2013 reports that, in Hungary, 16.2% of the 50+ population provided informal care, while based on a representative survey of the population, Rubovszky reports that 25.5% of the 18+ population provided informal care in- or outside the household for a relative/friend over 65. According to the European Quality of Life Survey (EQLS) from 2016, the proportion of self-reported informal carers in the population aged 18 or above providing informal care at least once a week was 18% in Hungary.

Such differences can partly be explained by different definitions across studies regarding who is considered as a carer. This can be restricted to only family members or also include other members of the social network such as friends/neighbours. Restrictions could be used regarding the content of the care provided, the quantity of time spent on providing care, the duration of care, or the care recipient (e.g., only older people or all age groups). Such differences hamper comparisons of study results.

Similarly, there are differences as to the gender dimension of care. OECD Health at Glance reports that the share of women among informal carers (among the population 50+) is 71.0% in Hungary. In contrast, the EQLS survey reports similar rates for males and females in Hungary.

According to the European Quality of Life Survey (EQLS) from 2016, 7,5% of the working age population (18-64) are carers: 4,1% are working carers, 3,4% are carers not in employment.

A recent study (Baji 2019) shows that the average age of current informal carers is 56.1 years in Hungary. The share of women among carers is 58.4%. Informal care providers most often were mostly in the age category 35–64 (i.e., working age), and provided care for their parents (in-law).

According to some researchers (Gyarmati 2019), the number of informal carers will decrease, as an ever-increasing number of elderly people do not have living children, and even if they do, those children have often moved abroad. The number of divorcees, meanwhile, continues to rise. Moreover, role expectations and attitudes towards the care of the elderly are currently undergoing a genera­tional shift: ever fewer middle-aged adults feel a moral obligation to look after their elderly parents, and elderly people themselves do not seem to expect it of their children. The consequences – for these researchers- are obvious: if the state does not reassess its own role in the care crisis, an ever-increasing number of deprived elderly peo­ple will be left without care, or indeed any kind of support whatsoever.

Recognition and definition of carers

The Fundamental Law (Constitution) of 2011 further exacerbated the trend of shifting the burden of care to the families, by enjoining the duty of caregiving on them. Based on this principle, the mandate to support elderly parents was extended in 2016 by licensing third parties, such as homes for the elderly, to legally force adult children to support their elderly parents financially, e.g. by contributing to the fee for living in a care centre

Families have been forced to take upon themselves the care of their elderly family members, without a backup by measures or policies that would make this possible, with the state increasingly relinquishing its obligations in this field.

In the summer of 2018 a grassroots mobilisation and movement led by advocacy groups such as Lépjünk, hogy Léphessenek Közhasznú Egyesület, (‘Let’s step so that they can step as well’), Csak Együtt van Esély (CSEVE) Csoport (‘Only together do we stand a chance’), and aHang (‘The Voice’) and supported by extensive coverage by opposition online media brought home care, and more specifically the home care of disabled persons to the attention of the general public raising awareness of the plight of those caring for disabled family members and required to live on only the care allowance provided by the state. The long-term goal was to have the care of disabled family members legally recognised as work.

Multisectoral care partnerships

Informal and formal care rarely meet. There is a tendency on the part of professional carers to underestimate the role and contribution of informal care.

Identification of carers and assessment of their needs

None available.

Access to respite care

None available

Training and recognition of carers’ skills

The quality of informal care, including care financed through the nursing allowance, has no official definition. No specific regulations, guidelines, protocols or other tools are developed; no checks and monitoring are offered in the informal sector of home care. The public LTC sector does not provide support measures, such as training or skill validation or support for preserving the mental health for informal carers. Such activities are left to civil society.

Thus, in the framework of the HELPS project of the Central European Programme of the European Union, the Hungarian Charity Service of the Order of Malta (HCSOM) drawing on earlier research began to elaborate and test a web-based pilot program called WebNővér (WebNurse; www.webnover.hu), which comprises six elements: 1. short explanatory videos teaching nursing tasks, 2. service map, 3. mental support, 4. nutrition advice, 5. care advice, 6. legal advice. Access is free, ensuring quick dissemination. The pilot program was presented to the media, governmental and local decision-makers, ex­perts and a wider audience in January 2014. Since then, it has begun to spread and raise awareness of how a web-based solution can help informal carers.

Social inclusion of carers, access to education and employment

The small package that seeks to ease the burden of familial care providers consists of two measures: a cash benefit (nursing allowance or fee) and (unpaid) leave.

 

Nursing allowance

The nursing fee is a social allowance provided to carers. Applications need to be based on the expert opinion of the GP treating the dependent person. The fee is paid to carers who provide LTC for severely disabled family members (including both the elderly as well as the severely disabled permanently ill young family members).

In 2017, about 53,000 people received one of the various forms of nursing allowance. Many are unaware that they are entitled to this financial support.

There are different types of nursing allowance available to support informal carers.

The standard nursing allowance is HUF 37,490 (about EUR 115). Depending on the health of the care recipient, an increased nursing allowance may be paid at 150% of the standard allowance; or, since 2014, an extra nursing allowance may be paid (180% of the standard nursing allowance). The amount of the latter is HUF 67485 (about EUR 210) a month, it can be paid to care providers if the recipient cannot be rehabilitated (his/her health status falls below the 30% threshold on a 0 to 100 scale applied by those authorities assessing health status) and cannot live without assistance.

A fourth kind of nursing allowance (the gyod) has been introduced in January 2019, for parents nursing their permanently ill or disabled children (including adult children) at home. It is granted to about one third of former recipients, to provide them with a higher amount, HUF 100,000 a month (about €310).

The nursing allowance is exempt from income tax. It is, however, subject to pension contributions (10%). It builds up eligibility for old-age pension.

The nursing allowance is not means tested and is not indexed. Its level is set annually by Parliament in the budget law. It can be combined with work, for 4 hours a day. No such limit applies if the care provider works from home. The nursing allowance is not time limited. It is terminated if the conditions of eligibility cease to exist (if the health of the recipient improves, or if he/she dies; or if the authorities find the care provider to be failing in his/her duty).

The nursing allowance is not intended to fully replace the wage of the carer, but to offer limited compensation. The amount of the regular version is small, about 15% of the average monthly net wage and 34% of the official net minimum wage.

The gyod is a first, although still limited, attempt to remunerate family home nursing as a job. Its net amount is 91% of the net minimum wage. In addition, the government promised to raise it to the level of the minimum wage by 2022. However, the gyod is available only to informal carers nursing disabled children. Other informal carers, who provide care to parents or other relatives and who make up about two thirds of recipients of nursing allowances, are not eligible for this new benefit. Civil society organisations complain that this creates divisions and punishes certain families for not caring for the right people as if caring for parents, spouses or all the other care users, were of less worth. They want the government to extend the conditions of the new benefit to all nursing allowances. Also, they are calling for it to go hand in hand with all the legal advantages of paid employment.

 

Care leave

The Labour Act allows relatives to go on unpaid leave for a maximum of 2 years for employees who provide personal care for a permanently ill relative. Needs have to be confirmed by the healthcare system and the employee has to provide care by him/herself. Unpaid leave is full time and it does not generate eligibilities for health care or pensions.

There are no statistics, either from government, non-governmental organisations or the academic sector, on the frequency and average length of such leave or its cost in terms of lost income.

The Labour Act allows relatives to go on unpaid leave in order to take care of a child under the age of 3. The maximum age of the child rises to 10 if the child is disabled or permanently ill.

An alternative to carer’s leave can be flexible labour market practices. Evidence from EQLS12 shows that the Hungarian labour market is among the least tolerant in this respect, and does not show the typical European pattern of growing flexibility as income rises. The proportion of workers who can vary their start and finishing times at work is the lowest of the EU Member States, and the difference is most visible in the higher-income groups. Also, Hungarian workers are among those with the least opportunity of being able to take a day off at short notice. Here again, the largest difference between the Hungarian and the European values appears in the highest income category. The only measure of flexibility on which Hungarians fare relatively well, especially at lower income levels, is the chance to accumulate hours for time off.

The dynamic expansion of home care and meals-on-wheels services, though they do not directly target carers, but rather care recipients, has made it easier for many to balance work and family. These measures improve the well-being of care recipients, but it is unclear to what extent they relieve familial care providers, or just provide services to people previously uncared for.

References
  • The 2021 Long-Term Care Report, Trends, challenges and opportunities in an ageing society, EC 2021
  • The 2021 Ageing Report, Underlying Assumptions & Projection Methodologies, EC, 2020
  • Joint Report on Health Care and Long-Term Care Systems and Fiscal Sustainability, Hungary, EC, 2019
  • ESPN Thematic Report on Challenges in long-term care –Hungary, EC, 2018
  • ESPN Thematic Report on work–life balance measures for persons of working age with dependent relatives, Hungary, 2016
  • ESPN Flash Report 2019/26, Hungary has introduced a “home nursing allowance for children”, May 2019, European Commission
  • Baji et al., The burden of informal caregiving in Hungary, Poland and Slovenia: results from national representative surveys, The European Journal of Health Economics (2019)
  • Judit Veres, Left out in the cold: informal home care in Hungary, ETHOS Project, February 2019
  • Andrea Gyarmati, Ageing and Care for the Elderly in Hungary, April 2019
  • Zsuzsa Széman, Transition of long-term care in Hungary: problems and solutions- 2015
  • Zigante, Informal care in Europe, Exploring Formalisation, Availability and Quality, London School of Economics and Political Science, April 2018
  • DG-EMPL- Adequate social protection for LTC needs – Hungary

Last Updated on March 2, 2023

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