INTERLINKS was a three year project designed in a spiral configuration to elaborate on the INTERfaces and LINKS between health and social care, and between formal and informal care. Its main aim was to construct a general framework for describing and analysing long-term care (LTC) for frail older people. The project was co-ordinated by the European Centre for Social Welfare Policy and Research (Vienna) with a consortium of 15 partners from 12 Member States (AT, DE, DK, EL, ES, FI, FR, IT, NL, SE, SK, UK) and Switzerland.
The bases for this framework were laid by scientific work resulting in more than 30 national and 4 European overview reports focusing on prevention and rehabilitation, quality of care and informal carers as well as of governance and financing of LTC. These explorations underlined that LTC is still a rather new area of social protection at the interface between health and social care systems as well as between formal and informal ways of caring.
However, practices that address inconveniences and shortcomings experienced by older people in need of care as well as by their families have emerged in many countries, namely approaches to embed prevention and rehabilitation in policies and interventions, even if users are already in need of care, and approaches to promote quality improvement in LTC, rather than bureaucratic inspection, by means of training, appropriate indicators and organisational development.
Furthermore, first support measures have been introduced focusing on both the informal carer and the beneficiaries of care and linking informal carers with the formal care system in a partnership approach that is backed-up by measures to better combine work and care. However, many of these measures are still restricted to projects that would need up-scaling and further investments. Proper governance and financing mechanisms for LTC are therefore needed to avoid further growth in health expenditure because a huge number of older people with care needs end up in hospitals due to the lack of adequate support and coordination.
Respective findings and practice examples were used to construct and validate the INTERLINKS Framework for LTC with six themes, each of which has 2 to 6 sub-themes with 2 to 8 key-issues. The resulting 135 key-issues have been illustrated by almost 100 practice examples from individual countries that show the way ahead towards innovation and better coordination between health and social care, and between formal and informal care. This systematic Framework for LTC has been translated into an interactive website (http://interlinks.euro.centre.org), which is targeted at policy-makers, managers and organisations working in and with LTC as well as at researchers to improve policies and practice by mutual learning from innovative approaches.
The rising demand for LTC calls for policy approaches allowing for holistic and inclusive views that integrate the role of different public programmes, sectors of society, and private initiatives. Moreover, there is growing evidence about discrimination of older people in need of care concerning their access to mainstream health care and to prevention and rehabilitation.
The current state in all European countries with fragmented policies and organisations providing more or less partial support to LTC systems that mainly rely on informal care shows that LTC is still under construction and calls for a systematic developmental approach that needs to be addressed by health and long-term care reforms.
The involvement of National Expert Panels and a European Sounding Board since the beginning of this project will ensure further use and dissemination of knowledge collected. This expertise fuelled an ample range of presentations and publications on national and European levels with the aim to further involve the wider public in the future development of the Framework and the website, e.g. by adding own examples and exchanging experiences in relation to their transferability and adaptation to the various developmental stages of LTC in European countries.
Further activities are needed to roll out and scale up these experiences to continue the systematic development of LTC systems based on values to improve the quality of life and self-determination, integrated pathways, participative leadership, community based care and appropriate resources