Abstract

Background: Informal care forms a corner stone of all LTC systems in Europe and is often seen as a cost-effective way of preventing institutionalisation and enabling users to remain at home. LTC reform packages have included important components focused on informal carers. A common trend is to introduce cash payments as support for people in need of LTC or directly to informal carers. These have often been motivated by a desire to offer care users more choice of their care package, but also in an effort to formalise the care provided by the family. The distinctions between formal and informal care, paid and unpaid care are blurred, which carried important implications for how the role of informal carers and the quality of the care provided.

Objectives: The purpose of this study is to explore the range and meaning of policies which ‘formalise’ the role and status of informal carers in a subset of European countries. These schemes, either directed at carers specifically or indirectly through user policies, ‘formalise’ the caregiving role and treats carers as recognized care providers. The study also attempts to shed light on the relevance of this policy trend for quality of informal care.

Methods: The sample includes seven European LTC systems, representing the various LTC and informal care regime types. Evidence was gathered through a scoping of the literature and national reports, documents and legislation on LTC policies and legislation. The focus is on cash allowances, carers assessments, training and legislation for informal carers and any studies including quality of informal care.

Results: The formalisation of informal care takes place either through payments, social security (pension and health insurance), legislation (recognition of status and rights to being assessed as a carer), statutory employment related rights and training/certification of skills schemes. Within this category of policies there is a huge variation in design, regulation, implementation and outcomes. The more regulated schemes (UK, the Netherlands, France and Sweden) offers some protection for both vulnerable users and informal carers. Regarding quality, the study identified a conflict between governments’ responsibility to ensure quality of the care they fund through public money, and the inherently private nature of the informal care relationship between carer and user. If informal care is indeed unpaid then, unless there are safeguarding or abuse concerns, the quality of that care is seen as a private matter.

Conclusions: The level of regulation of cash payments is crucial for understanding the impact of such policy measures on the reshaping of the LTC system. Depending how payments are regulated, cash allowances can have very different effects on the formal–informal division of care. When the use of cash benefits is strictly regulated the aim tends to be to encourage a formal market and the complementary use of formal care services. On the other hand, unconditional cash benefits may create ‘incentive traps’, where informal carers are encouraged to leave the labour market and end up in a dependency situation in relation to the family member who receives the benefit.