In Europe, in case of chronic illnesses, 80% of all care is provided by informal carers – i.e. people who provide unpaid care to someone with a chronic disease, disability or other long-lasting health or care need, outside of a professional or formal framework. While caring for a loved one can be a source of great personal satisfaction, it does create its own set of challenges. Although in households when a member has a chronic illness or disability one of the relatives is often designated as “primary care” (i.e. the person bearing the main care responsibilities), we know that when there is a change in one family member, it affects all family members (Wright and Leahey, 2000). A functional relationship among caregivers and care recipient is the key for a successful change of roles and the adaptation of the family. Therefore, to face this change, a new balance should be established in the family. On the other hand, we know that people belonging to different age groups and with different kinships to the care-recipient (young children, adult children, grandchildren, spouses…) can have different experiences and perspective on the burden of care, so it is necessary to take all of them in account in order to be able to provide a comprehensive and effective support to families with caring responsibilities. In order to respond to all these needs the S.IN.CA.L.A. partnership believes in the importance of developing and piloting a model of pedagogical interventions based on a family-focused approach able to identifying strengths as well as vulnerabilities of all family members, addressing the challenges that might arise from the disease and building individual and family resilience. The educational tools developed will be based on experiences carried out in Greece, by partner Alzheimer Hellas, and will be adapted and transferred to all other country contexts.During the implementation of the project, the main outcome has been the development of Intellectual Output 1. This resulted in the research report focusing on the family member's experiences of caring role. With the research report the partnership created literature review that informed the methodology and built towards data collection and analysis on the respective findings. For the data collection, use of focus group interviews brought together 86 participants from the partnership countries (spouses, children and grandchildren of 60+ family member with care needs). Alongside these activities the partnership formed guidelines for such data collection, assembled data collection kit, created qualitative data analysis forms and delivered the research report with the input from the professionals working with carers in partnership countries, 42 in total. Such approach validated the findings, improved the overall process and informed the build-up of following Intellectual outputs. Especially, the Intellectual output 2, which would have resulted in pedagogical intervention tailored for family carers in partnership countries.In order to communicate the aims of the project, activities and the results of the Intellectual output 1, different type of dissemination activities were completed - project leaflets, press releases, newsletters, articles, presentations etc. The target audience varied based on the type of activity, 20-40 people in audience to 15 000 visitors on the websites monthly. Efforts were made to reach different audiences, starting from the family carers, social workers on local level, working up to national level policy makers and support networks.The main practical results expected on the completion of the project would have been: (1) a tested pedagogical method based on narration, adapted to different EU-country contexts, and targeting household who are caring for older dependent family members with the goal of increasing their family-resilience; (2) a MOOC, to transfer the results achieved and the lessons learnt to a wider audience of professionals. We therefore expect to make available a methodology that educators, social workers and carer support workers can use in their local contexts to engage with families with caring responsibilities in order to improve the resilience of the household and mitigate the negative impacts of caring in the households. The project was coordinated by MTÜ Eesti Omastehooldus and developed by a diverse partnership of NGOs working with older persons and their carers in Portugual (CASO50+), Italy (Anziani e non solo), Slovenia (Spominčica /Forget-me-not - Alzheimer Slovenia) and Co-Creation Support CLG (Ireland). The expert partner, is the Greek Association of Alzheimer’s Disease and Related Disorders (Alzheimer Hellas).For professionals and stakeholders, we expect an increased consciousness of how providing care can impact on the whole family and the capacity to use this deeper understanding to improve and innovate their services, including through the introduction of narrative techniques. On local stakeholders and communities, we expect an increased awareness of the challenges of caring at societal level and on innovative experiences and practices carried out in other countries that could be of inspiration for new policies and services. We also expect increased openness towards other European countries and cultures, increased awareness of the importance to adopt a whole-family approach and an increased awareness about the contribution of the European Union activities towards the support to informal carers. In whole, the expectations were met and the innovative approach created momentum for different interventions in favor of family carers.

When a person begins to develop Alzheimer Disease (AD), they may begin to have difficulties living independently. Episodes occur in which the relatives of the affected person can detect difficulties in the administration of money, driving a vehicle or the ability to live alone on the part of the person suffering from cognitive impairment. In the early stages of AD, some people still believe that they can function without problems, and may even insist that they are well and that it makes no sense to try to interfere with their lives AD-AUTONOMY is launched with the main objective of increasing the competences (attitudes, skills, knowledge) of Persons with Initial/Mild Alzheimer (PwA), Families and Caregivers, about how to improve Quality of Life of PwA through Autonomy through an innovative training program The project has the next specific objectives: • Aware and motivate this group on the importance of maintaining the autonomy of people, within a security and support environment, as an element of QoL for PwA and their families. • To increase the Autonomy of PwA for taking decisions and live independently with a global Wellbeing and QoL approach. • Transfer good practices and recommendations to this group to promote Autonomy through training in the execution of daily routines • Transfer tools, including Apps and Assistive Technologies, to support the processes of empowering and increasing Autonomy of PwA. • Transfer techniques for the emotional management of impairment associated with illness and related problems, based on the concept of mindfulness. • Involve professionals and supports In order to cover all the needed competences, the consortium includes: • 3 entities working in the field of supporting PwA (AFAC, SPO, Derneği), involving a big collective of persons, families and professionals. These organizations have own staff and also established cooperation with experts in their countries in order to give technical support to the University and Technological Centre when adapting the outputs to PwA. • 3 Universities (UPV, BU, AUTH) specialized in development and application of ICT solutions adapted to collectives with special needs, specially Alzheimer Through the execution of this Project the next results will be obtained; • Co-Created Methodological Guide will be developed, with the direct participation of End Users, with the main objective of determining the key contents, methodologies and tools needed for creating and improving the critical competences of persons with Alzheimer, their supports (families and professionals) and professionals regarding Autonomy for increasing their Quality of Life. • Training Materials addressed to persons with Alzheimer, families and professionals for facilitating the implementation of Autonomy in a safe and supported environment. • Designed Experiential Training Activities addressed to persons with Alzheimer, families and professionals for facilitating the implementation of Autonomy in a safe and supported environment. • Development of an e-Training Platform, including awareness, training contents and references or links to existing ICT Tools/ICT Assistive Technologies solutions for supporting the implementation of Training Materials and Designed Experiential Training Activities. • Creation of 5 AD-AUTONOMY UNITS in all the countries of the Consortium in order to ensure the sustainable exploitation of the project after the project lifetime. • Development of Dissemination Actions addressed to the European collective related to persons with Alzheimer. VALIDATION ACTIONS will be organized on each country, based on the practical implementation of Training Materials, Designed Experiential Activities and e-Training Platform, involving about 30 persons, including persons with Alzheimer and families, and 10 caregivers. Evaluation and analysis will be done. Project Activities will be completed with Management and Implementation actions AD-AUTONOMY will benefit a number of persons during the project lifetime: • 150 persons with Alzheimer and their families will be trained (30 in Spain, United Kingdom, Slovenia, Turkey and Greece), through their participation in the validation actions of Training Materials, Designed Experiential Training Activities and e-Training Platform. • 50 professionals (10 in Spain, United Kingdom, Slovenia, Turkey and Greece), will be trained, through their participation in the validation actions of Training Materials, Designed Experiential Training Activities and e-Training Platform. • 1500 persons with Alzheimer, families and professionals (300 in Spain, United Kingdom, Slovenia, Turkey and Greece), will be aware, through the dissemination actions to be carried on through the project website, newsletters, leaflets, etc.

Alzheimer and dementia (AD) is an important disease that causes memory, thought, and behavioural problems. It is the most common cause of dementia in the elderly and its frequency is increasing rapidly. According to the World Alzheimer Report 2016, there were 46.8 million people worldwide living with dementia in 2015 and this number will reach 131.5 million in 2050. People with Alzheimer and dementia generally require high levels of care, most of which is provided by informal or family caregivers. Without caregivers, people with dementia would have a poorer quality of life and would need institutional care more quickly, and national economies would be swept away by the advancing demographic tidal wave. People with AD are cared for at home by members of their family. And that those family members, in turn, have higher incidence of stress and depression, as well as lower overall quality of life. Project goal is to enable family caregivers to sustain a decent quality of life as they care for their loved one, and to provide a comfortable, dignified existence for people suffering from dementia. Project aims to develop family carers’ knowledge of Alzheimer’s and other dementias, and their caring skills, to enable them to respond more confidently to their family members’ needs. Project Aims are:1- to help family carers to break down their isolation, recognise themselves as carers, and develop digital literacy.2- to better understand and develop new approaches to address the family caregiving needs of patients with Alzheimer and other dementias (AD).3- to develop better strategies for the care of patients with AD and for alleviating caregiver burden.4- to improve the quality of life for caregivers of people with AD5- to show how can adult education be promoted more effectively in the context of health services in the public. 6- to analyse different approaches in different EU member countries and to use findings of that research wherever needed. The project will be carried out totally 6 partners. Within the Project, two Short Term Learning, Training activities to be held in Portugal and Slovenia in order participants to acquire skills to apply the methodology to adopt new training approaches for adult education. With the project, participants who will participate in short term training activities will increase their professional competence. The project will also provide new ideas to improve the professional knowledge and skills of participants. Participants will have the opportunity to see good practices in place and use new learning methodologies.Within the project local training courses will be organized for family caregivers in order to help family caregivers to stay physically and emotionally healthy. Training courses to the family caregivers will include the stages of the disease, the possible problems that can be seen in each phase and their coping methods (security measures, alternative solutions to the problems caused by forgetfulness, responsibility). In order to reduce the problems to be experienced in changing the patients' home, portable bars / strips that could be placed and placed in every place they went (yellow-coloured from the room to the kitchen, blue-coloured from the room or toilet / food and beverage signs) will be planned to be produced. In addition to this, patients with Alzheimer's may come together with young people and children, organizations which can be closer with soil and nature, hobby gardens and workshops, considering that it would slow down the worsening of the symptoms.Intellectual outputs of DemCARE Project are: Innovative Training Curriculum, Training Materials, Handbooks for Family Caregivers, ICT Based e-learning Module and Computer Games. These intellectual outputs will provide needed information and training to insure that patients' needs to Family caregivers. The project outputs will also provide family caregivers with information on how care should be managed at home, thus the quality of care for patients with AD will increase as well as provide a positive impact on caregivers' psychology. Thus, social inclusion and personal development will be provided.Also, two multiplier events (seminars) will be organized in Burdur and Slovenia with participation of relevant stakeholders for sharing and disseminating the intellectual outputs realised. Thus, the project will encourage them to use project outputs and methodologies and to take advantage of the developed training materials. Project will impact increase their awareness levels about the possibility of introducing adult education mechanisms and their responsibility in promoting social services.

In Europe, 80% of all chronically ill people are taken care of by informal carers – people who provide unpaid care outside of a professional or formal framework. While caring for a loved one can be a source of great personal satisfaction, it also creates challenges, like physical and mental health problems, a feeling of social exclusion, difficulty in balancing paid work with care responsibilities and other possible financial worries (Eurocarers).Although when a family member has a chronic illness or disability one of the relatives often acts as the “primary care provider”, in which roles are often reversed (i.e. a child taking care of their parent) which often affects all family members (Wright and Leahey, 2000). A functional relationship among caregivers and care recipient is the key for a successful change of roles and the adaptation of the family, therefore, supporting only the primary carer is not enough. Furthermore, people belonging to different age groups and with different kinships to the care-recipient (young/adult children, grandchildren, spouses) can have different experiences and perspective on the burden of care, so it is necessary to take all of them into account in order to be able to provide comprehensive and effective support. Research has also demonstrated that the caregiver stress that often arises in informal caregiving situations can lead to situations of abuse. Almost 10% of older people who are cared for by family caregivers are at risk of elder abuse (Ananias, Strydom, 2014).From a family-resilience perspective, families are regarded as a unit with intrinsic strengths and resources, and potential for growth (Black & Lobo 2008; Zauszniewski et al. 2010), with positive relational bonds and connections between family members being integral to maintaining their ability to weather adversity (Walsh 2006). However, it should be considered that resilient abilities are not innate, but can and should be learnt and cultivated through dedicated pedagogical methods, such as that of the therapeutic narrative.In order to respond to all these needs the partnership believes in the importance of developing and piloting a model of pedagogical interventions based on a family-focused approach able to identifying strengths as well as vulnerabilities of all family members, addressing the challenges that might arise from the disease and building individual and family resilience. The educational tools developed will be based on experiences carried out in Greece, by Alzheimer Hellas, and will be adapted and transferred to all other country contexts.The main practical results expected on the completion of the project are: (1) a tested narrative based workshop for informal caregivers, adapted to different EU-country contexts, and targeting households who are caring for older dependent family members with the goal of increasing their family-resilience; (2) guide for professionals to identify and address issues that emerge from workshops; (3) a MOOC, to transfer the results achieved and the lessons learnt to a wider audience of professionals; and (4) E-course and online educational platform for informal care givers and professional support providers.We therefore expect to make available a methodology that educators, social workers and carer support workers can use in their local contexts to engage with families with caring responsibilities in order to improve the resilience of the household and mitigate the negative impacts of caring in the households.The project is coordinated by NPO Women’s Support and Information Center (domestic violence org, Estonia) and developed by a diverse partnership of NGOs working with older persons and their carers or domestic violence victims in Portugual (CASO50+), Italy (Anziani e non solo), Slovenia (Spominčica, Slovenia) and Union of Women’s Association in Heraklion Prefecture (Greece, Creta). The expert partner, is the Greek Association of Alzheimer’s Disease and Related Disorders (Alzheimer Hellas). University of Tartu will be responsible for developing & managing the MOOC for the project due to its strong expertise on designing and developing e-learning courses.For professionals and stakeholders, we expect an increased consciousness of how providing care can impact on the whole family and the capacity to use this deeper understanding to improve and innovate their services, including through the introduction of narrative techniques. On local stakeholders and communities, we expect an increased awareness of the challenges of caring at societal level and on innovative experiences and practices carried out in other countries that could be of inspiration for new policies and services. We also expect increased openness towards other European countries and cultures, increased awareness of the importance to adopt a whole-family approach and an increased awareness about the contribution of the European Union activities towards the support to informal carers.

"Down Syndrome (DS) is a chromosomal disorder, occurring at about 1 in 600/1.000 births (worldwide population is about 6 million). One of the significant changes of Persons with Down Syndrome (PDS) at the beginning of the 21st century is manifested in the remarkable increase in their life expectancy thanks to advances in the fields of integral health, in the incorporation to an inclusive education and labor market, and in the new models of independent life that are increasing at EU level PDS are more likely to develop a premature pathological ageing due, among others, to reasons of a neurobiological nature (Flórez, 2010). Usually, PDS older than 30 years shows symptoms of ageing. This pathological ageing is associated with dementia processes and combines disorders of cognitive and behavioral functions, also modifying personality . There are currently knowledge, recommendations and tools that will allow addressing the problems associated with the ageing of PDS, however, currently its implementation is insufficient, mainly for the following reasons: • Lack of adapted methodologies to transfer knowledge and methods to PDS and professionals in an affordable way • Lack of tools adapted to the abilities of PDS, including ICT solutions, to implement the recommended actions, including cognitive stimulation. • Lack of an integrated and inclusive approach that includes the supports of PDS, that is, family and community members. DS-AGEING is launched with the main objective of increasing the competences (attitudes, skills, knowledge) of PDS over 30 years, Professionals and Families about how to improve the Well-Ageing, according to the Active Ageing Model, through an innovative training program The project has the next specific objectives: • Promoting the prevention and identification of the physical and cognitive effects of ageing • Transferring adapted methods and tool for the realization of physical activities and cognitive stimulation in order to prevent the effects of ageing and train in their use. • Promoting the realization of independent, inclusive activities and community participation and train in their realization • Preparing PDS in the absence of support received by parents and tutors throughout their lives, including the correct management of the legal and economic aspects derived from the ageing of PDS • Identifying, analyzing and training in the use of ICT solutions that could support the whole process of ""Well-Ageing"" Through the execution of this Project the next results will be obtained; • Co-Created Methodological Guide (I.O.1) will be developed, with the direct participation of End Users, with the main objective of determining the key contents, methodologies and tools needed for creating and improving the critical competence • Training Materials (I.O.2) addressed to PDS over 30 years, Professionals and Families for improving their Well-Ageing, according to the Active Ageing Model • Designed Experiential Training Activities (I.O.3); They will be the core of the Training Program and they will enhance the practical and experiential training of PDS over 30 years, Professionals and Families, including the optimal and oriented exploitation of aforementioned Training Materials within real environments. • Development of an e-Training Platform (I.O.4), for supporting the implementation of the Training Methodology, including Training Materials, Workspace and link to applicable ICT Tools. • Creation of 5 DS-AGEING UNITS in order to ensure the sustainable exploitation of the project after the project lifetime. • Development of Dissemination Actions DS-AGEING will benefit a number of persons during the project lifetime: • 40 persons with Down Syndrome and 40 families and Professionals will be trained (20 in Spain, Portugal, Romania and Slovenia) through their participation in the validation actions of Training Materials, Designed Experiential Training Activities and e-Training Platform. • 2.500 persons with Down Syndrome, families and professionals (500 in Spain, Portugal Slovenia, Romania and Greece) will be aware, through multiplier events and dissemination actions to be carried on through the project website, newsletters, leaflets, etc…"