Chapter 8: The Role of Informal Caregivers in Long-Term Care for Older People: Needs and Supports

This chapter aims at describing and analyzing how the role of informal caregivers is reflected in terms of experiences and relationships, highlighting their needs and the response to them provided by different long-term care (LTC) systems. Informal caregivers represent an often invisible “pillar” of our welfare systems, albeit they outnumber the professional LTC workforce, both in terms of units and of overall economic value of the tasks they perform. Not few of them spend a great amount of time in providing assistance, especially when they live with the cared-for person. A gender-based analysis shows that, while women (who predominate in this role) are more likely to handle emotional support and personal care, men usually deal with financial and legal issues. A good integration between formal and informal care provision would play a crucial role to ensure an adequate quality and continuity of care. However, the availability of formal services—in terms of coverage, intensity and quality—varies largely across countries, following different approaches. To better capture this variety, this chapter first provides a conceptual framework integrating the main actors involved in LTC, including the emerging role of migrant care workers. Secondly, it describes in detail informal caregivers’ main needs and the support interventions which can address them. Finally, it closes with a few reflections on the overall role of informal care and its relation with some current social and cultural trends.