Informal care of older people, people with disabilities and long-term care services

Rising long-term care needs keenly felt by women

The EU is currently experiencing unprecedented demographic changes. The share of population above 65 years old in the EU is expected to increase from 19 % in 2016 to 29 % by 2080, and the percentage of people above 80 years old will more than double to 13 %[1] in that time. A rapidly ageing population leads to an ever-growing need for long-term formal and informal care. In 2017, one in four people in the EU had a long-term disability, women (27 %) more than men (22 %)[2]. Given this context, the EU will face a major challenge in meeting LTC needs in a financially sustainable way, ensuring care is affordable without endangering the quality of services or the lives of care providers and the cared-for (European Commission, 2017a).

LTC is ‘a range of services and assistance for people who, as a result of mental and/or physical frailty and/or disability over an extended period of time, depend on help with daily living activities and/or [are] in need of some permanent care’ (European Union, 2014). LTC can be performed either formally by paid professionals or informally by family members, relatives, friends or others. LTC systems vary significantly across EU Member States, with differences in the extent of provision, benefits and services provided and institutional settings (Spasova et al., 2018).

In the EU-28, LTC relies heavily on informal care, with evidence indicating that the number of informal carers is twice that of formal caregivers (European Union, 2014). The prevalence of informal care might be associated with the lack of accessible, affordable and good-quality formal LTC facilities and services (Spasova et al., 2018). In many Member States, formal home-care services remain underdeveloped and difficult to access. As such, research highlights the increasing role of domestic workers, often migrant women, in the provision of LTC at home in several EU Member States (Spasova et al., 2018).

Due to a higher life expectancy, more women than men are in need of LTC. In addition, the vast majority of formal and informal carers are women. Women’s greater involvement in informal care, which negatively impacts their participation in the labour market, also increases their risk of economic dependency, poverty and social exclusion. In the EU, almost one in every three inactive women (32 %) aged 20-64, compared to just 5 % of inactive men in the same age group, is not in paid work due to family and/or care responsibilities[3]. Evidence of greater degrees of chronic stress and depression among female caregivers has also been found as women often have to combine care responsibilities with household chores and work (Schultz, 2008). The availability, accessibility and affordability of care facilities are, therefore, crucial elements allowing carers, especially women, to stay in or enter the labour market and to reconcile work and life duties and needs.

The European Pillar of Social Rights endorses everyone’s right to accessible, good-quality and affordable LTC services, and in particular home care and community-based services. The 2019 directive on work—life balance for parents and carers also introduced a new right for workers to take at least 5 working days per year of carers’ leave where a relative has a serious illness or dependency. These provisions aim to remove some of the barriers faced by informal carers, especially women, to both entering and staying in employment.

The development of sustainable models of care delivery is of high political importance in the EU. For instance, the Social Protection Committee and the European Commission are promoting new ways to provide adequate and sustainable LTC services in ageing societies through investment in preventive care, rehabilitation and age-friendly environments. As part of this process, the European Commission launched the blueprint on digital transformation of health and care in 2016. This initiative highlighted the potential of digitalisation in helping informal carers to maintain an active and productive life while providing care for their dependents (European Commission, 2016a).

Women bear the brunt of long-term informal care duties

More women than men assume long-term informal responsibilities at least several days a week or every day. Overall, women represent 62 % of all people providing LTC in the EU[4]. At EU level, the informal LTC rate for older people and/or people with disabilities was 15 % for women and 10 % for men in 2016. Significant variations exist between and within Member States in the number of informal carers (Figure 39). The share of people who report that they are providing informal LTC reaches 32 % for women and 20 % for men in France, whereas in Germany it is as low as 5 % for women and 7 % for men. There is nearly equal distribution of care duties in Sweden, Romania, Croatia and Estonia (0.8 p.p.), and gaps as high as 13 p.p. in Belgium, 11 p.p. in France and 10 p.p. in Malta. Despite a large variety of formal LTC systems, the disproportionate distribution of informal care duties to women’s disadvantage is a persistent pattern across the EU-28.

Figure 39: Percentage of women and men caring for older people and/or people with disabilities at least several times a week (18+), 2016 (Indicator 3)
Note: * Germany is noted to be the only Member State where slightly more men than women care.
The question asked: In general, how often are you involved in any of the following activities outside of paid work? (D) Caring for disabled or infirm family members, neighbours or friends under 75 years old; (E) Caring for disabled or infirm family members, neighbours or friends aged 75 or over. Answers ‘every day’ and ‘several days a week’ were used.
Member States are grouped on size of the gender gap. ‘Considerably more’ — gender gap is higher than 5 p.p.; ‘somewhat more’ — gender gap varies from 1 to 5 p.p.; ‘no gap’ refers to a gender gap from – 1 to 1 p.p.; within the group, Member States are sorted in descending order.

When interpreting the differences among Member States, it is important to take into account the subjectivity in assessing involvement in LTC. The EQLS did not provide a definition of ‘care’. As a result, ‘providing care’ can be understood as encompassing a vast range of actions of varying intensity, from the maintenance of social links to support for daily activities or even near-medical care.

Older women most likely to be long-term informal carers

Women of pre-retirement age (50-64 years) are most likely to take care of older people and/or people with disabilities. In the EU, 21 % of women and 11 % of men of this age provided LTC every day or several days a week in 2016, compared to 13 % of women and 9 % of men aged 25-49 years.

About a third of women aged 50-64 years in Belgium (37 %), France (33 %) and Latvia (33 %) provide care at least several days a week (Figure 40). The difference in informal LTC rates between women aged 20-49 years and women aged 50-64 years is particularly striking in Poland (– 17 p.p.), Spain (– 17 p.p.), Greece (– 16 p.p.) and Belgium (– 16 p.p.). Similarly, in 22 EU Member States, men of pre-retirement age (50-64 years) are more likely to provide LTC than younger men (20-49 years). The highest percentage of men of pre-retirement age involved in informal care are found in Latvia (28 %), France (21 %) and Estonia (17 %).

Figure 40: Percentage of women and men caring for older persons and/or persons with disabilities at least several times a week (50-64 years), 2016
Note: Member States are grouped on size of the gender gap. `Considerably more’: gender gap > 5 p.p. `Somewhat more’: gender gap 1-5 p.p. `No gap’: gender gap from  - 1 to 1 p.p. Within the group, Member States are sorted in descending order.

As well as differences between age groups, there also are gender gaps within different age groups. Overall for the EU there is a 10-p.p. difference among women and men of pre-retirement age and a 4-p.p. gap among those aged 20-49 years. In 21 EU Member States, gender gaps among the 50-64 age group follow a similar pattern, reaching 22 p.p. in Belgium, 19 p.p. in Greece and 19 p.p. in Spain (Figure 40). There are only two Member States (HU, HR) where the share of women and men informal carers aged 50-64 is about equal, and three Member States (CZ, PT, EE) where older men are slightly more likely than older women to provide LTC.

The intersection of gender and age underscores the particularly disadvantaged position of older women in the gender division of informal care responsibilities and the challenge that intensive care poses on their work—life balance. Although people aged 50-64 years are still economically active in a large number of Member States, their employment rates are much lower, especially for women involved in informal care.

Long-term care duties intensify gender inequalities in employment, particularly for women

A closer look at people who are in paid work and who are also providing LTC on a regular basis gives an insight into how many employed people have added pressure on their work—life balance. A large share of employed people, particularly women, combine work with care responsibilities. In the EU, 13 % of all working women and 9 % of working men were providing care to older people and/or people with disabilities at least several times a week in 2016 (Figure 41). In 21 EU Member States, a larger proportion of working women provide informal LTC. On the other hand, in four EU Member States (RO, SE, IE, PT), working men account for a bigger share of carers. In Austria, Germany and Czechia, the gender division is almost the same.

Figure 41: Percentage of employed women and men caring for older people and/or people with disabilities at least several times a week (18+), 2016 (Indicator 4)
Note: Member States are grouped on size of the gender gap. ‘Considerably more’: gender gap > 5 p.p. ‘Somewhat more’: gender gap 1-5 p.p. ‘No gap’: gender gap from – 1 to 1 p.p. Within the group, Member States are sorted in descending order.

In general, women and men providing LTC are less likely to participate in the labour market. In the EU, 42 % of women and 56 % of men taking care of older people and/or people with disabilities every day or several days a week in 2016 also had paid jobs, compared to 47 % of women and 58 % of men without care responsibilities (Figure 42).

Figure 42: Percentage of women and men caring for older people and/or people with disabilities at least several times a week who have a paid job (18+), 2016

In all but four EU Member States (DK, DE, EE, ES), men carers are more likely than their women counterparts to be in paid work. The largest gender gap is observed in Romania (– 42 p.p.), where only 36 % of women providing LTC are engaged in paid work. Gender differences are also significant in Italy (– 35 p.p.), Austria (– 33 p.p.) and Portugal (– 28 p.p.), where one in five women involved in informal care have a paid job. In contrast, the smallest gender gaps are found in Spain (0.2 p.p.), Poland (– 4 p.p.) and Croatia (– 5 p.p.).

The gendered nature of care responsibilities is evident across all age groups. Among those aged 20-49 years, women caring for older people and/or people with disabilities participate in the labour market by 8 p.p. less than women without such responsibilities and by 19 p.p. less than men carers. Men’s employment rate in this age group is high, regardless of their involvement in informal care (Figure 42).

Women of pre-retirement age (50-64 years) are even more negatively impacted. Fewer than one in two women (48 %) providing LTC is employed, in comparison with 66 % of men. Among those who are inactive, every tenth woman aged 50 years or more reports that family or care responsibilities are the main reasons for taking a career break and/or not seeking a job (EIGE, 2016b). Informal caring duties can also lead to early retirement for older carers, particularly women (European Commission, 2013).

Research suggests that the impact of informal care provision on work might vary due to different factors, including the number of hours of care provided, whether care is provided to a co-resident or someone living outside the household and the availability of formal care services (Colombo, Llena-Nozal, Mercier, & Tjadens, 2011). The intensity of care is another important variable in assessing the impact of care work on the mental health of carers. In fact, caring for more than 20 hours a week is linked to a 20 % higher prevalence of mental health problems among carers than for non-carers (Colombo et al., 2011).

Overall, in Member States where women disproportionately bear the burden of LTC, gender inequalities in labour participation are higher. In fact, EU Member States with larger gender gaps in the provision of care for older people and/or people with disabilities have lower scores in the sub-domain of participation in the labour market (r = 0.3338 *) (Panel A in Figure 43). For instance, Belgium has the highest gender gap in care, with 26 % of women and 12 % of men providing care (gender gap – 13 p.p.), as well as one of the lowest scores in the sub-domain of participation (78.2 points). Furthermore, scores for this sub-domain are lower in Member States where the gender division of care duties among those of pre-retirement age (50-64 years) is particularly unequal (Panel B in Figure 43).

Figure 43: Score of the Gender Equality Index work sub-domain of participation, and (A) the gender gap informal LTC rate (Indicator 3, 18+) and (B) the gender gap in the informal LTC rate (age group 50-64).
Note: EIGE’s calculations, EQLS, Gender Equality Index, (*) refers to significance at 10 %.

One in three households live without adequate care

In the EU, 29 % of households reported unmet needs for professional home-care services in 2016[5] (Figure 44). Among Member States, this figure ranges from 12 % in Sweden to 86 % in Portugal. Some of the most common reasons reported by households are affordability (49 %) and lack of available care services (15 %)[6]. For instance, in Cyprus, Romania and Poland, the cost of professional home-care services is an obstacle for up to 85 %, 80 % and 71 % of households respectively.


Figure 44: Percentage of women and men reporting unmet household need for professional home-care services (16+), 2016 (Indicator 5)
Note: Data on Denmark is not available.

Certain groups of the population may have more difficulty in accessing formal LTC services, including people with low income, poorly educated people, migrants and ethnic minority women (European Commission, 2009). As a result, households are forced to provide care themselves or, in some Member States, to outsource care to domestic workers, who are very often migrant women. In Italy, for example, three in four home carers are migrants (European Commission, 2013). The situation of migrant domestic workers engaged in informal care is of major concern. Most care migrants have irregular contracts which generally implies precarious working conditions and limited access to social-protection rights (Spasova et al., 2018).

‘Unmet need’ is a subjective measure which does not provide an insight into the type of needs that are not met in different Member States as people’s living conditions and available services vary across Member States. The reporting of unmet needs was slightly higher in the households where a woman responded to the survey (30 %) than where a man responded (28 %). Women are more likely than men to report an unmet need for professional home-care services in all but six Member States (LU, NL, AT, PT, SE, UK). This may be due to their greater involvement in informal care. Moreover, older women tend to live alone more often than men, and therefore may be in need of care to a greater extent.

Inability to access professional care services when needed not only impacts upon the quality of life of the person in need of care, but may also force others to allocate more time to caring. This can have far-reaching effects on their ability to combine paid work with care duties. In addition, it can prevent their access to better-quality jobs and negatively affect their employment status and the number of hours they can engage in paid work (ILO, 2018a).

Considerable differences exist across Member States as regards unmet needs for professional home-care services and the levels of gender equality achieved. Among other things, this shows that different ways of organising professional home care could contribute to gender equality, and that there is still huge room for improvement in many Member States where gender equality could be further boosted across different areas of life. As demonstrated by Figure 45 (Panel A), the highest levels of gender inequalities in the use of time, as measured in the Gender Equality Index’s domain of time (particularly in the sub-domain of social activities), are noted in Member States (e.g. EL, PT) with very large shares of households with unmet needs for professional home-care services (r = – 0.4646 *). In contrast, Member States with the best gender-equality achievements in the use of time (e.g. SE) are noted to have very few households with unmet needs for professional home care. Furthermore, care infrastructure is noted as being particularly linked to women’s career prospects. In Member States where households reveal high levels of unmet needs for care services, women are noted to have lower scores in career prospects[7] (r = – 0.5863 *) (Panel B, Figure 45). The same connection, although to a marginally lesser extent, exists for men — the higher the level of unmet needs in the household, the poorer the career prospects of men on average.

Figure 45: Unmet care needs for older people and/or people with disabilities, and (A) Gender Equality Index score of time domain and (B) career prospects index scores for women (16+)
Note: EIGE’s calculations, EU-SILC, Gender Equality Index, * refers to significance at 10 %. Data on Denmark is not available.