Abstract

Background and objectives: In order to ensure that the care systems of the future are person-centered and responsive to care needs, it is essential to reflect the voices of care users and the preferences of individuals and communities in all decision-making processes. With momentum for long-term care reform building both at national and European level, our study sheds light on changing preferences and attitudes towards care, which should inform and guide all relevant decision-making processes.

Methods: Fifteen years after the Special Eurobarometer 283 on Health and long-term care in the European Union, the InCARE survey on attitudes, experiences and expectations on long-term care collected 2,373 responses from 26 EU countries. Data were collected through an online survey instrument between September 2021 and February 2022.

Results: We present an overview of results bringing to light significant changes in the attitudes, expectations and long-term care experiences of Europeans, especially among younger cohorts. Overwhelming support for increasing the role of the State in long-term care organization, provision and financing and shifting the burden of care away from families and individuals, is improperly reflected in current policies. What is more, a failure to do so is negatively affecting trust in care systems, as well as increasing the reliance on informal carers at the detriment of their health and wellbeing. Since 2007, the ability of care systems to adequately address evolving care needs has declined: residential care is unaffordable for many, and the supply of community-based services is falling considerably behind a rising demand. Rural communities and poorer individuals bear the brunt of growing capacity gaps, while women are disproportionately affected by the burden of frequent, intensive and undesired informal caregiving spells.

Conclusion: A reorientation towards person-centered, participatory, equitable and accessible care models is urgently needed to rebuild declining public trust in the ability of care systems to respond to the preferences and expectations of individuals and communities.

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