Good practices in supporting informal carers

Lessons from well-developed formal LTC systems

InfoCare

PROJECT CO-ORDINATOR

PROJECT TEAM AT THE EUROPEAN CENTRE

Niki Kalavrezou, Selma Kadi, Selam Woldemariam, Kai Leichsenring

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 long-term care (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 aimed 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:

Assessed key indicators of informal caregiving across the EU-27 to benchmark and identify four countries with LTC systems and caregiving patterns similar to Sweden for further analysis.
Reviewed and analysed 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.
Conducted expert interviews with stakeholders in the selected countries to explore the unique challenges informal carers face, good practices for support, policy developments, and experiences with legislative processes and implementation.

METHODS

InfoCare employed a mixed-methods approach, combining the following methods:

Benchmarking and quantitative analysis: We compared key indicators of informal caregiving across EU countries and identified 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 conducted 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 carried 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 good practices in the selected countries.

ACTIVITIES/MILESTONES

The results of this project are a report and a Policy Brief, which were published in January 2026.

FINDINGS

Using an international benchmarking approach, Finland, Germany, Lithuania, and the Netherlands were selected as case studies. These countries were chosen because they combine relatively high LTC expenditure with favourable outcomes for informal carers, while representing different types of LTC systems. In these four countries, we assessed policies across four areas: financial support, social security, care leave, and measures to improve carers’ well-being, including respite care. Despite their progress, all four countries continue to face several common challenges: (1) the persistent underutilisation of available benefits and services; (2) the need to expand support measures by broadening eligibility, increase benefit levels, improve national coherence, and introduce new forms of support; and (3) the importance of acknowledging the diversity of informal carers and tailoring policies to their varied needs. These shared challenges demonstrate that even advanced LTC systems still have room for improvement in providing comprehensive and effective support to informal carers.

The European Centre for Social Welfare Policy and Research supports the Sustainable Development Goals