BACKGROUND
Informal carers provide essential support to relatives or friends due to old age, illness, or disability, playing a crucial role in the health and care system. While caregiving can be rewarding, it often comes with significant challenges, including heavy workloads, emotional strain, and insufficient support. It can also negatively impact carers’ health, employment, and family life.
The situation of informal carers varies depending on the availability of formal LTC services and direct support measures, which differ substantially across the EU. While those in countries with well-developed LTC systems may be better off than carers in countries with limited services, they still face distinct challenges. These may include difficulties in coordinating with professionals, inadequate direct support, or a lack of recognition of their specific needs. As a result, informal carers in these systems may have unique but overlooked support needs.
AIMS
InfoCare aims to provide the Swedish Ministry of Health and Social Affairs with an overview of the challenges faced by informal carers and the policies implemented to support them in countries with well-developed formal long-term care (LTC) systems, i.e. countries comparable to Sweden in this regard. The findings can help inform targeted and effective support measures for informal carers in Sweden. To this end, we will:
- Assess key indicators of informal caregiving across the EU-27 to benchmark and identify three to five countries with LTC systems and caregiving patterns similar to Sweden for further analysis.
- Review and analyse recent academic and grey literature on the challenges faced by informal carers and support measures, with a focus on countries with well-developed formal LTC systems in order to identify gaps and opportunities for improving support for informal carers.
- Conduct expert interviews with stakeholders in the selected countries to explore the unique challenges informal carers face, best practices for support, policy developments, and experiences with legislative processes and implementation.
- Perform an in-depth analysis of selected good practices (approximately 5–7), evaluating their strengths, weaknesses, opportunities, and threats (SWOT analysis) as well as their potential social and economic impact.
METHODS
InfoCare employs a mixed-methods approach, combining the following methods:
- Benchmarking and quantitative analysis: We will compare key indicators of informal caregiving across EU countries and identify those countries most comparable to Sweden by analysing large-scale databases such as Eurostat and the OECD Health Database, along with survey data from sources including the European Health Interview Survey (EHIS) and the Survey on Health, Ageing, and Retirement in Europe (SHARE).
- Literature review and desk-based research: We will conduct a structured review of international academic and grey literature to identify existing support measures for informal carers, with a particular focus on countries with well-developed formal LTC systems.
- Qualitative stakeholder interviews: We will carry out semi-structured interviews with key stakeholders, including policymakers, researchers, and representatives of carer organisations, to gain insights into the specific challenges informal carers face, policy developments, and best practices in the selected countries.
- Case studies of selected best practices: We will undertake a detailed examination of approximately 5–7 promising initiatives, assessing their strengths, weaknesses, opportunities, and threats (SWOT analysis) and their potential social and economic impact.
ACTIVITIES/MILESTONES
The results of this project will be a report and a policy brief, which will be completedby December 2025.
