Engaging in research: A pragmatic approach to older people’s rights

Older people face increasing barriers to their participation to their family and societal lives, especially because the combination of functional limitations and age stereotypes exposes them to a range of inequalities, including a risk to their personal autonomy. To counteract the negative impacts of discriminating attitudes and practices and to inform academic community and a wider public on older people’s needs and rights, AGE Platform Europe works on more than 20 different European projects, which refer to a wide range of issues, from health and care, Information and Communication Technologies (ICT) and accessibility, through mobility and build environments to tourism.

The role of AGE in projects varies widely, but in all of them AGE works to make the older people’s perspectives heard, to effectively involve end-users possibly at all stages of activities, and to ensure the main ethical and legal issues are correctly addressed.

Thanks to this involvement, AGE brings evidence of how the rights to live in dignity and fully participate and contribute to society can be realized at grassroots level. Building synergies between our policy work and research is also a key approach to support the creation of age-friendly environments, as promoted by the recently launched European Covenant on Demographic Change launched (link), developed as an outcome of the EU-funded AFE-INNOVNET Thematic Network (see below).
What follows is a sneak peek on some of our key achievements of 2015, on which we will keep working in 2016.

Putting older people at the forefront of age-friendly initiatives

After two years of hard work and stakeholders’ mobilisation, the EU-funded AFE-INNOVNET Thematic Network has passed on the torch to the European Covenant on Demographic Change, a legally established non-profit association that already gathers 112 organisations, including 44 local and regional authorities (68 of them signed the Covenant Statutes as founding members).

AFE-INNOVNET, coordinated by AGE from February 2014 to January 2016, developed a number of tools aimed at helping public authorities adapt their physical and social environments to population ageing, including a guide on how to involve older persons in the design and monitoring of their age-friendly initiatives, as well as an evaluation and impact assessment framework for such initiatives.

Creating age-friendly environments is one of the most effective approaches to respond to demographic change, while creating inclusive societies: by joining the Covenant, interested stakeholders position themselves at the forefront in addressing population ageing. They benefit from mutual learning and partnership, various tools to implement and assess the impact of their age-friendly initiatives. This will lead the way to help Europe become more age-friendly.

The Covenant is open to all public authorities and legally established organisations based in the EU and associate countries active in the field of age-friendly environments.

For more information on the Covenant, please refer to our previous Special Briefing.

Supporting palliative care

Protecting human rights in palliative care depends on the shared responsibility of all involved stakeholders. Comparing the effectiveness of palliative care for older people in long-term care facilities in Europe (PACE) tests a comprehensive provision of palliative care in six different European countries. In September 2015, with the aim to integrate the perspective of older people in the project, AGE organised a User Forum composed of both experts from the AGE network as well as from Alzheimer Europe. The discussions included, among others, the need to deliver integrated care, to take into account the personal beliefs, the family and community context, and to adapt training programmes and healthcare’s organisation. The outcome of this event will contribute to build the policy recommendations that AGE will deliver by the end of the project in 2019. In June 2016 AGE will be organising a mid-term policy conference that will aim to consolidate a more comprehensive approach to palliative care and to highlight the need to integrate it into all policies related to the care for older people.

Representing the voice of seniors on integrated care

A human rights approach to care is centered around individual needs and wishes of long-term care users. Such an approach requires the coordination of health and social care to ensure the delivery of quality long-term care. Contributing to this, the SmartCare project is implementing integrated care with the support of information sharing technologies in nine European regions. AGE is involved in the project most notably as coordinator of the Users’ Advisory Board. This body, composed of European organisations representing older people, patients, carers, nurses and insurers, is in charge of visiting the pilot regions, meeting all users and analysing their satisfaction and how their needs have been taken into account in the design of the service. These visits revealed the very positive impact that integrated care has on the quality of life of older people with a chronic health condition. They showed how integrating health and social care can contribute to independent living and to decrease unnecessary hospital admissions. The Board highlighted the need not to underestimate the importance and convenience of personal contact; however, the technologies used to allow older people to monitor their health at home proved to be valuable means to allow independent living and reduce unnecessary care, especially in rural or remote areas where healthcare is not readily available. With all the materials gathered, the Board will be delivering under AGE’s leadership a comprehensive document summing up the main observations made, the lessons learnt and the recommendations addressing both the pilots and the policymakers around the delivery of quality user-centred integrated health and social care.

Adressing barriers to senior-friendly tourism in Europe

With senior citizens (55 years old and over) representing about 25% of the European population, the European Union feels that the contribution of senior citizens to the European tourism industry is significant and should be reinforced to face the challenge of seasonality, stimulating economic growth and jobs in Europe.

Alongside, the free movement of European citizens is to be encouraged, where travel accessibility and safety are key and non-negotiable features for all, and especially for the most vulnerable travelers.

In all this, senior tourists are growing in number and represent a significant economic market potential, but older tourists are also a very heterogeneous group and their demand and criteria for choice are far from being obvious. To help shed light on this topic, AGE Platform launched a European-wide survey to identify their interests and expectations, and gathered more than 900 replies from across Europe in 3 weeks. Conceived within the EU-funded ESCAPE project, aimed at enhancing existing tourist infrastructure and staff in low season, the survey’s analysis offers country-based insights (targeting in particular France, Italy, Cyprus, Greece, Bulgaria and Portugal, project partners’ Countries), alongside with widespread trends related to choices when travelling, and provides an overview of older people’s approaches to seasonality and preferences for themes and leisure activities. The survey also addressed intergenerational comparisons, accessibility and seamlessness issues, as well as underlined older people’s concerns when encountering barriers to their freedom of movement. This work allowed to deliver ten thematic tourism packages all focusing on quality and safety: whatever the ESCAPE destination is, it is tailored made! Willing to explore Cyprus for instance? Escape to Cyprus and other 5 countries here!

Age-friendly criteria have been explored and determined, so that you can select hotels, accommodation settings, means of transport, attractions, which respect accessibility criteria and other key senior-friendly features. Those facilities and operators complying with these criteria have started joining the ESCAPE Club, recognizing their efforts for ensuring senior-friendly tourism. Take a look at the https://escape2europe.eu for constant updates and the most recent packages, and book already your package to ensure you and your travel partners friendly, cheerful and fun trips.

Researching how changingfamily and societal patterns impact equality and solidarity

The Families and Societies project is a large-scale research project focusing on changing demographics and public policy. The aim is to analyse the changes in family patterns and relations in Europe and the interplay with existing public policies in order to contribute to evidence-based policymaking. Especially the research on intergenerational linkages is important for AGE’s work, for it looks into the organisation of the caring responsibilities within families and the way public policies shape those linkages in the family. In 2015, AGE co-organised a seminar on migrant families and contributed to the new PERFAR Policy Database by providing examples of existing databases on social policies and demographics, and published an interview on care and domestic migrant workers. In 2016, AGE has co-organised a seminar on intergenerational linkages in the familyand will be elaborating, together with Population Europe, a Policy Brief that will reflect the discussions of the seminar and the recommendations for policymakers. The final project conference, in October, will be an excellent opportunity for the project to present all the results and increase the impact of the findings on policymaking.

Tackling stereotypes to mobilise the potential of Active Ageing

The MoPAct project, for ‘Mobilising the Potential of Active Ageing’, will enter into its final phase in 2016. This large research project brings together almost 30 partners, mostly universities, to investigate how demographic change can contribute to European societies. AGE participates in the project by helping in the organisation of the ‘Active Ageing Forums’, one of which took place in Tallinn in April 2015 and the next one taking place in Vienna in March 2016. Research takes place in an interdisciplinary manner and tries to connect disciplines where it is most useful: while the research on the economic consequences of ageing show that longer working lives and investment in life-long learning make the costs of ageing less burdensome, the project collected a number of good practices on company level that show how people can work up to higher retirement ages. The work package on pension systems looks into existing private savings programmes and draws up recommendations on private pensions and pension communications. The work on health and well-being has established that healthy life expectancy has been declining in the recent years and analyse factors that allow people with diseases to participate in society, and research on long-term care looked at innovations in social support. Going further, research on biogerontology looked at the processes that determine ageing at the cellular level and telehealthcare. Research has also been provided on the potential of age-friendly environments and new technologies to promote active ageing. Finally, political research has analysed how political preferences evolve in a changing society and media research on how to overcome negative stereotypes against ageing.

Developing guidelines on involving older people in social innovation

INNOVAGE – Social Innovation promoting Active and Healthy Ageing – is a European project dedicated to developing and testing social innovations that will have a solid impact on improving the quality of life and well-being of older people. AGE, as project partner, developed practical Guidelines on involving older people in social innovation development. The guidelines aim to support all social innovation actors including researchers, service providers, professionals, older people organisations, etc. in engaging older people in innovation processes. They offer step-by-step guidance and a practical set of tools and methods, as well as tips and tricks to efficiently involve users and get the most out of their participation.

Promoting rights-based trainings for care professionals

The WeDO2 (or We do, too!) project aimed at supporting the exchange of learning experiences and good practices between stakeholders involved or working in the field of care for older persons and education to improve the Wellbeing and Dignity of Older persons in need of care. Based on the existing WeDO European Quality framework for long-term care services and European Charter for the rights and responsibilities of older persons in need of care, the project tested and finalised in 2015 a Quality Care training package, a set of trainings on a rights-based approach and following the train-the-trainer method.

The Quality care training package aims to be easy to use and interactive with a strong involvement from participants. It includes : an introduction guide, which explains the “what, why and how” of the training package and includes some experiences from the WeDO2 project training testing sessions, and a manual for trainers, guiding them through the training and providing them with a full detailed description of the training modules and the different steps to take.

The full Quality care training package, available in several languages, can be downloaded on: https://wedo.tttp.eu/quality-care-training-package.

For more information on EU research projects, please contact ilenia.gheno@age-platform.eu

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