Informal Caregivers and Psychosocial Support: Analysis of European Dementia Policy documents

Abstract

Various countries in Europe have different strategies for promoting care solutions for dementia challenges. The different approaches of Austria, Belgium, Czechia, Denmark, Finland, Germany, Gibraltar, Ireland, Israel, Malta, Nederland, Norway, Sweden and the United Kingdom (Scotland and Wales) were investigated. Dementia has a significant social, psychological and economic impact on the individual, family and society. As the disease progresses dementia sufferers become increasingly dependent. As many dementia sufferers are at home during the initial stages, the physical, emotional, and social demands of the dementia sufferers are often covered by informal caregivers. This study, therefore, aims to investigate the integration of psychosocial interventions for comprehensive care pertaining to informal caregivers of people with dementia in Europe. Furthermore, the study will highlight how implementation of technologies might enable psychosocial support of informal caregivers. The data is based on 15 national dementia strategies from various European countries. Data was based on preexisting coding systems with the predefined keywords and analyzed by qualitative content analysis by four of the authors. Our results show that psychosocial support is provided in various modalities and that informal caregivers need to be supported by a psychosocial approach. Due to this need the national dementia strategies should include measures to reduce the emotional burden of informal caregivers. Psychosocial support provided to informal caregivers in a comprehensive and systematic way is likely to enable informal caregivers to handle the emotional, cognitive, and behavioral consequences of the disease and its treatment, while helping to maintain their work-life balance.

Barriers to participation in educational programs for family caregivers of people with dementia

“…It has also been proposed that follow-up centres should be established to provide long-term individualised support to people with dementia and the families who care for them. Moreover, a recent European review study pointed out that "only two out of 15 countries -Austria and the Czech Republic -do not report interventions to support informal caregivers through public campaigns" (Tokovska et al, 2022). This could be an impulse to strongly support the growth of public awareness on topics related to dementia, including destigmatization, creating a dementia-friendly society, and psychosocial support and education for carers through campaigns.…”

Self-Help Groups within Nursing Homes: The Experiences of Family Caregivers in Northeastern Italy

“…Unlike groups led by professionals, self-help groups provide unique benefits such as friendship, mutual support, experiential knowledge, identity, and a sense of belonging. Self-help groups allow caregivers to express the pain, discouragement, difficulties related to their loved one’s disease, exhausting care work, and guilt, especially in cases where the older adult has been placed in a nursing home [ 26 , 27 ]. Self-help groups have proved to be of great value in improving the well-being of people under psychological distress as well as of healthcare professionals [ 28 ].…”

Aplicación del Protocolo Unificado para el tratamiento transdiagnóstico de los trastornos emocionales en cuidadores familiares de enfermos con demencia.

“…Una de las más frecuentes son los denominados trastornos neurocognitivos mayores y menores (APA, 2014), o más conocidos como demencia. Estos tienen como consecuencia provocar una situación de dependencia en aquellas personas que la padecen (Villarejo Galende et al, 2021), lo que conlleva a precisar de atención y asistencia constante de un cuidador (Tokovska et al, 2022). Los cambios sociodemográficos, la introducción de nue-vas estructuras familiares, el acceso de la mujer al mercado laboral, así como la dispersión geográfica, han puesto de manifiesto la relevancia de la figura del cuidador formal para desempeñar las funciones del cuidado de estas personas con demencia en situación de dependencia.…”