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Long-Term Care: The Family Dimension

Key recommendations from COFACE FAMILIES EUROPE to shape lomg-term care systems for and with families

Long-term care (LTC) addresses people needing support in many aspects of living over a prolonged period of time. LTC differs from other types of health care in that its goal is not to cure an illness or an impairment, but to keep a good quality of life, to prevent institutionalisation and/ or manage the deterioration in health status for people with a degree of longterm dependency.

Individuals need LTC when at birth, or during life, when a chronic condition, trauma, or illness limit their ability to carry out basic self-care tasks, called activities of daily living (ADLs) such as bathing, dressing, eating, communicating or to practice domestic activities, called instrumental activities of daily living IADLs, such as household chores, meal preparation, or managing money. LTC helps them in their basic care and in their independent living and it can include rehabilitation, basic medical treatment, home nursing, social care, housing and services such as transport, meals, occupational assistance and help with managing one’s daily life.

The need for long-term care touches a large portion of the European population and it is increasing: it is estimated that one in two women and one in three men will come to need intensive LTC as they age. According to Eurostat, between 2017 and 2080 the share of those aged 80 years or above in the EU-28 population is projected to more than double and those aged 65 years or over will likely move from 19.4 % to 29.1 %, while the population of working age is expected to decline. The current social and demographical changes, such as changing family structures, the situation of intergenerational families, women’s increased participation in the labour market and the growing ageing population are affecting LTC provision in terms of size and practices.

Families are and will be affected by growing LTC needs as many of them provide care informally. COFACE Families Europe promotes a holistic approach to long-term care taking into account roles, needs and rights of both care recipients and caregivers.

Informal care, also known as unpaid care or family care, according to the OECD, is based on the informal nature of the relationship between care recipients and carers.

COFACE Disability’s European Charter for Family Carers defines a family carer as a non-professional person, who provides assistance with activities of daily life, either in part or whole, to a person with care, or supports needs in his/her immediate circle.

Family care constitutes a significant share of the total LTC provision in European countries. Estimates suggest that 80% of all long-term care in Europe is provided by informal carers. The available appraisals of the number of informal caregivers ranges from 10% up to 25% of the total population in Europe. The average varies significantly between countries, groups of countries and depending on how informal care is defined and measured. favouring of community care options over institutionalisation.

Leaving family carers to provide almost all the care to their relatives in need, without giving them recognition, social protection and appropriate working arrangements risks undermining the social inclusion, the health and the gender equality of their families. According to the European Social Policy Network (ESPN) Study on LTC, most

EU countries face issues relating to access to and financing of LTC systems, due to the institutional and geographical fragmentation of LTC provision. The report also highlights the consequences of the common trend towards prioritising home care: underdeveloped home care services and community-based care are the most difficult to access in many countries, but the availability of residential care has been decreasing in several countries over the past 25 years.

The ESPN Study underlines that the main reasons of expansion of informal care are the lack of accessible formal LTC facilities, the poor quality and the high cost of LTC as well as the persistent traditional model of intergenerational and familial relations. Unfortunately, only a limited number of countries have well-developed services such as training, counselling, respite services tailored to informal carers. Finally, domestic workers, often migrant women, play an increasingly important role in informal care in many countries: the issues of their qualifications and working conditions need policy responses in many countries.

Long-term care is a highly gendered issue as women are the majority of care recipients (due to their higher life expectancies) and are also the majority of both formal and informal carers. Moreover, a large share of informal LTC is provided by people who are older than standard retirement age. Women often leave the labour market to take care of dependent family members or they are likely to accept lower qualified positions to accommodate their family duties upon their return. According to Eurostat, in 2016, the gender pay gap was at 16.2% and one of the reasons for its existence and size was that women more often take career breaks or parttime work due to caring responsibilities and decisions in favour of family life. According to Eurofound, about 7% of male workers and 11% of female workers are providing regular care and among those with caring responsibilities, 90% of men work full-time, compared to only the 50% of women. The gender gap is very pronounced regarding inactivity due to caring responsibilities: in 2017, 31% of women reported caring responsibilities as the main reason for them not being part of the labour force, which was the case for only 4,5% of inactive men. Informal care is likely to become even more important in the future due to demographic change, health care advances, and LTC policy and costcontainment pressures leading to the favouring of community care options over institutionalisation.

Leaving family carers to provide almost all the care to their relatives in need, without giving them recognition, social protection and appropriate working arrangements risks undermining the social inclusion, the health and the gender equality of their families.

According to the European Social Policy Network (ESPN) Study on LTC,10 most EU countries face issues relating to access to and financing of LTC systems, due to the institutional and geographical fragmentation of LTC provision. The report also highlights the consequences of the common trend towards prioritising home care: underdeveloped home care services and community-based care are the most difficult to access in many countries, but the availability of residential care has been decreasing in several countries over the past 25 years.

The ESPN Study underlines that the main reasons of expansion of informal care are the lack of accessible formal LTC facilities, the poor quality and the high cost of LTC as well as the persistent traditional model of intergenerational and familial relations. Unfortunately, only a limited number of countries have well-developed services such as training, counselling, respite services tailored to informal carers. Finally, domestic workers, often migrant women, play an increasingly important role in informal care in many countries: the issues of their qualifications and working conditions need policy responses in many countries.