Cross-national data on informal caregivers of older people with long-term care needs in the European population: time for a more coordinated and comparable approach

Abstract

To promote long-term care policies for older adults, accurate mapping of the often invisible and insufficiently recognized role of their informal caregivers is needed. This paper measures the prevalence of informal caregivers in the European population, illustrates current difficulties in gathering unequivocal information on this topic and deals with the scientific and policy implications of the problem. Using the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS) and the Study on Health and Ageing in Europe (SHARE), the current difficulties in gathering unequivocal information on this topic are illustrated. In most countries, the share of informal caregivers varies, sometimes markedly, among the three surveys. As for the sex of caregivers, while confirming the well-known higher prevalence of caregivers among women than among men, large variations emerge across the three surveys in most countries in respect of the two sexes. The takeaway message of the paper is that it is urgent to promote international concerted action in gathering comprehensive informal caregiving information and/or exploring in greater depth the different intercultural understandings of informal care itself.

Informal caregivers in Germany – who are they and which risks and resources do they have?

“…In the present analyses, it was assumed that frequent provision of support (≥10 h per week) suggests a regular activity with daily or almost daily caregiving and therefore comes closer to the construct of informal care. Nevertheless, it must be stated that a clear definition of informal long-term care is still missing especially on the European level ( 21 ). The present study allows to describe the group of informal caregivers in more detail with regard to the extent of care provided and their social characteristics, health status, and possible risk and protective factors, and to compare them with the group of non-caregivers.…”

International Comparison of Social Support Policies on Long-Term Care in Workplaces in Aging Societies

“…Although data are released at the state and/or national levels [ 16 , 46 , 47 ], the level of data is far comparable at this moment. Only a few studies have shown such results [ 48 ]. Thus, even if an innovative system is proposed, it is not possible to evaluate the extent to which it is being utilized at this moment.…”

The concept of informal care: ambiguities and controversies on its scientific and political uses

“…The concept of care is multidimensional and constructed from distinct disciplinary, legislative and political frameworks, which potentiates considerable ambiguity and controversy (Glenn, 2016 ; Durán, 2018 ; ILO, 2018 ; Borgeaud-Garciandía and Guimarães, 2020 ; Fraser, 2020 ; Hirata, 2021 ; Tur-Sinai et al, 2022 ). Care work encompasses direct, personal and relational care activities, as well as indirect care activities (ILO, 2018 ).…”

“…In this sense, it is important to recognize that informal careers are not a homogenous group as they have different burdens and responsibilities (Jegermalm and Torgé, 2021 ). Despite being a fundamental pillar of LTC in most countries, with consequences and costs for both careers and care recipients, as well as for the care sector in general (Ribeiro et al, 2021 ; Tur-Sinai et al, 2022 ; Charalambous, 2023 ), informal care is often overlooked, which makes the exercise of quantifying it difficult (Rutherford and Bu, 2018 ; Cès et al, 2019 ; Tur-Sinai et al, 2020 ). Several studies have endeavored to assess the economic value of these tasks provided as part of family ties, often unrecognized although they have been increasing (Hoefman et al, 2018 ; Oliva-Moreno et al, 2019 ; EC, 2021a ; Ekman et al, 2021 ; White et al, 2021 ).…”

“…International comparison of data on the number of informal careers of people with LTC needs does not allow for unambiguous information. This difficulty becomes explicit when comparing, for example, the results of the European Health Interview Survey, the European Quality of Life Survey and the Study on Health and Aging in Europe, which show different results for the same countries (Tur-Sinai et al, 2022 ). In addition to the difficulty in measuring the real universe of informal careers, there is the ambiguous place they occupy in public policy: they are sometimes perceived as a resource of care policies, sometimes as co-producers of care, and sometimes as co-beneficiaries of care policies (Cheneau and Fargeon, 2022 ).…”