Mental disorders are highly prevalent in Europe and impose a major burden on individuals, society and the economy. They represent 22% of the EU’s burden of disability, measured as Years Lived with Disability. In addition, in 2015, there were an estimated 9.6 million people in EU countries living with dementia, equivalent to nearly one in every 50 people. Higher life expectancy will undoubtedly lead to increase of these figures in the years to come. Family caregivers play a central role in the care of persons with severe mental illness. The majority of caregivers live with the illness of their affected relative 24 hours of the day, each day of the year, and they spend, according to a survey, an average of 6 to 9 hours per day providing care. Additionally, 36% are the only caregiver. Despite their important role, caregivers frequently feel undervalued by the health care system. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives. Medical advances, shorter hospital stays, and expansion of home care technology have placed increased care responsibilities on families, who are being asked to shoulder greater care burdens for longer periods of time. During the preparation of this proposal, we found that in most EU countries the support of family caregivers concerns financial and insurance aspects only. Apart from information in monetary or insurance matters, family members are left alone without the possibility to get instant access for social and psychological support. Therefore, the overall objective of this project is to empower family members as caregivers and to give them instant and easy-to- understand access not only to relevant medical information, but also to psychological support for their own needs. The objectives of this project are • to empower citizens to develop self-confidence and patients competence in their caring for family members with mental illness: We will develop a Guide and a Resource Pack to support caregivers. The Guide will provide secure quality information, support, and resources for family caregivers of patients with chronic mental diseases and cognitive conditions such as Alzheimer’s, psaychotic disorders, Parkinson’s, dementia and other illnesses to better understand their health and their diagnosed disorders. The Family Caregivers Support Resource Pack will consist of two main sections: Caring for YOU and Caring for the Individual. The latter section is further divided into Child, Youth, Adult, and Older Adult sections to reflect caring for individuals across the lifespan and the responsibilities associated with caregiving; • to ensure immediate access to these products through the Family Caregivers Support e-Platform which will support the delivery of all materials of the project and will also support online interactive tools such as forums, blogs, and social networking applications, and through mobile applications for smart phones ; • to include refugees, asylum seekers and migrants who have no or only little command of the host country’s language: we will produce translations of the materials also into Arabic and Pashtun. The primary target groups for our project are adults who are caring for a family member with mental disease. The secondary target group are people working in health and social care organisations who can inform family caregivers about the existence of our Guidelines and Resource Pack or use the materials in their information and counselling activities. Also refugee and migrant counsellors belong to this target group, as they can disseminate the materials among their clients. Stakeholders are the key actors in public health care and institutions dealing with migrants and the integration of refugees. The immediate impact, already during the validation phase, will be the transfer of knowledge and skills to approx. 120 family care givers and to some 160 counsellors who are working with at least ten times more care givers from different backgrounds and to approx. 400 experts and key actors. We assume that they are working with at least 8,000 clients each year. They will be able to inform family caregivers about the existence of our Guidelines and Resource Pack or they can use the materials in their information and counselling activities. Also refugee and migrant counsellors can disseminate the materials among their clients, especially since the materials will also be available in Arabic and Pashtun. For the long-term impact we have estimated that in the countries of the partnership alone, more than 5,000 persons working in health and social care organisations and as refugee and migrant counsellors will be informed about the Family Caregiver Support Guide and Resource Pack.
Mental disorders are highly prevalent in Europe and impose a major burden on individuals, society and the economy. Family caregivers play a central role in the care of persons with severe mental illness. The majority of caregivers live with the illness of their affected relative 24 hours of the day, each day of the year, and they spend, according to a survey, an average of 6 to 9 hours per day providing care. Despite their important role, caregivers frequently feel undervalued by the health care system. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives. In most EU countries the support of family caregivers concerns mostly financial and insurance aspects. Apart from information in monetary or insurance matters, family members are left alone without the possibility to get instant access for social and psychological support. Therefore, the overall objective of this project was to empower family members as caregivers and to give them instant and easy-to-understand access not only to relevant medical information, but also to psychological support for their own needs, and to give them self-confidence and patients competence in their caring for family members with mental illness. We developed a Guide and a Resource Pack to support caregivers. The Guide provides secure quality information, support, and resources for family caregivers of patients with chronic mental diseases and cognitive conditions for the following mental disorders: • Dementia and Alzheimer • Substance abuse • Schizophrenia and other psychotic disorders • Depression and bipolar disorder • Post-traumatic stress disorder • Intellectual disabilities • ADHD • Autism • Eating disorders The Family Caregivers Support Resource Pack has been designed as interactive e-learning course. Each of the nine modules consists of various units for each of the above mentioned disorders: • Understanding the disorder • Concerns of the caregiver • Role of nutrition • Activities for the caregiver • Activities for the care receiver These contents are available at the e-learning platform in the languages of the partnership (English, German, Italian. Greek, Portuguese, Croatian, Slovak, Slovene) and also in Arabic and Pashtun. In this way, the project reaches also refugees, asylum seekers and migrants who have no or only little command of the host country’s language. Moreover, access to the Resource Pack is also possible through a multilingual mobile app. The primary target groups for our project are adults who are caring for a family member with mental disease. The secondary target group have been people working in health and social care organisations who can inform family caregivers about the existence of our Guidelines and Resource Pack or use the materials in their information and counselling activities. Also refugee and migrant counsellors belonged to this target group, as they can disseminate the materials among their clients. The stakeholders were the key actors in public health care and institutions dealing with migrants and the integration of refugees. During the lifetime of the project, i.e. from November 2018 until December 2020, the consortium organised more than 400 dissemination activities. More than 90,000 people were reached through online dissemination activities, while almost 5,000 people received printed project material, and more than 2,500 persons were reached in face-to face meetings or lectures. In addition, the project was presented at exhibitions or fairs with a total of 64,000 visitors. Two newspapers reported about the Family Caregiver Support project, with a total of more than 650,000 readers.