This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. We do so in pooled representative data for the Netherlands collected in 2014 and 2016 (persons >17 years, n = 13,165). One‐third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839). Marginal effects show differences in the associations of care‐giving relationships with sociodemographic factors, barriers and beliefs. Helping a partner is related to age, gender (older people and men are more likely to help) and household composition (singles help less often). Care for close family is given often by 45–64 year olds, women, multiperson households and those with strong family beliefs. Helping second‐degree relatives correlates with age (young people help more often), barriers (those living with children help less often) and beliefs (people with professional background in care and people who attend church or mosque helping more often). Providing non‐kin care is associated with age and education level (young people less likely to help, people with a high education more likely), barriers (having a fulltime job) and beliefs (work experience in care, church or mosque attendance and norms). The supply of care to partners and close family is mainly associated with sociodemographic factors and barriers while the provision of care to distant family and non‐kin is also correlated with beliefs. If desirable policy is to create more informal care, investment in the combination of work and informal care, childcare and supportive arrangements for older community living couples is recommended. It also might be worthwhile to enhance beliefs about the usefulness of helping each other in times of need.

Positive experience through informal care: construction of a scale An 8-item scale has been developed to measure positive experiences by informal caregivers, the Positive Experiences Scale (PES). The PES is a unidimensional hierarchical Mokkenscale which varies from intrinsic satisfaction and relational enhancement to improvement of competence and social enhancement. The scale has a satisfactory Loevinger’s H-value (0.37) and reliability (0.74). Furthermore, satisfying H-values are found for large groups of informal caregivers, such as carers for the elderly, the chronically ill, partners, parents and people who live in a care facility. For informal caregivers of people with dementia or mental impairments, two items do not uphold (‘I received appreciation for the care I’ve been giving’ and ‘the help brought me and my family and friends closer together’. For these groups a 6-item scale is advised. Solely for informal caregivers of people with psychological impairments, the scale as a whole does not uphold. Further research will have to determine how these caregivers derive positive experiences from caregiving. The PES is recommended because of its psychometric qualities and its usefulness in different populations of informal caregivers.

Faced with an unprecedented demand for long-term care, European health care systems are moving towards mixed care models, where the welfare state and informal caregivers share care responsibilities. While informal care is often viewed as a means of alleviating pressure on public care, it comes with significant economic costs for caregivers, their employers, and society at large. This study uses nationally representative data to estimate the total direct (informal care time and out-of-pocket costs) and indirect (productivity) economic costs of informal care in the Netherlands in 2019. Informal care time costs are estimated using the opportunity cost and the proxy good methods. Indirect costs are estimated using the human capital and friction cost approaches. Our results reveal the considerable annual societal cost of informal care in the Netherlands, ranging between €17.5 billion and €30.1 billion, depending on the valuation approach. These costs are equivalent to 2.15% and 3.71% of Dutch GDP in 2019, comparable to the public expenditure on long-term care in that year. Female caregivers account for slightly more than half (53%–57%) of the total costs. Around 57%–88% of these costs are in the form of informal care time. The main driver of indirect costs is the temporary cessation of work, which comprises 12%–17% of the total costs. Findings corroborate that substantial resources, yet thus far largely disregarded, are spent on informal care even in a country with a relatively generous public long-term care system.

Self perceived burden from informal care: construction of the EDIZ-plus To measure the experienced burden by informal carers (N=2.444), a 15-item Mokken scale has been developed. This concerns an extended version of the EDIZ (“Ervaren druk door Informele zorg”); several items refer to the pressure of time brought by the combination of labour and care and the consequences for the health of the informal carers are added to the EDIZ. We call this new scale the EDIZ-plus; it concerns a reliable one-dimensional and hierarchical scale which extends from 0 (no burden) to maximum 15 (severe burden). First, the burden manifests itself in feelings of responsibility of the carer, followed by having difficulty with combining work and family tasks and ultimately exceeding all limits due to too many obligations. In most cases this last group does not only deal with conflicts at home or at work and a decline in their own health, they also experience all other problems in the scale. The presumed limit for overburdening is enclosed by the proposition ‘caring put too much pressure on me’. This is a score on the EDIZ-plus of nine or higher. Furthermore, the scale has proved to be usable for several population groups, such as carers of partners and children, parents/parents- in-law and carers of different patient populations (people with dementia, mental disability or a chronic disease). The EDIZ-plus is not only suitable because of its reasonable psychometric qualities, but also because of the usability in different populations. Tijdschr Gerontol Geriatr 2012; 43: 77-88

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15–17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs’ mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs’ conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18–25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals’ family situations can affect their future. We searched relevant studies following the guideline of Arskey and O’Mailley’s methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.