European co-creation and implementation of the behavioural YOUNG-D program to reduce emotional stress and sleep problems in YOD

Background: Young onset dementia (YOD) often goes along with increased stress and sleep problems, which affects heart rate variability and quality of life. Relaxation exercises such as breathing and mindfulness have been described to help cope people with these issues. However, caregivers don’t always know how to handle emotional distress and questions regarding relaxation or sleep problems when they occur during their caregiving for people with YOD. Furthermore, caregivers don’t always feel skilled or secure to provide these relaxation exercises themselves to people with YOD. Methods: In 2021, researchers at Odisee University of Applied Sciences (Brussels, Belgium) designed a behavioural program (JONG-D) in co-creation with YOD care providers in Flanders. This program was intended for people with YOD to provide tools and coping mechanisms regarding stress and sleep management. Based on a co-creation process with seven European care and educational partners, an integrative YOUNG-D program was designed to provide caregivers an accessible program to help people with YOD with emotional distress and sleep problems (co-funded by the EU Erasmus+ program). Based on the YOUNG-D program, an e-learning was developed to help caregivers and students gain insight in the possibilities of breathing and mindfulness techniques as tools to cope with emotional distress and sleep problems in YOD. Results and conclusions: An e-learning was developed and provided to help caregivers and students understand the interplay between YOD and feelings, emotions and sleep as well as the application of relaxation techniques such as breathing and mindfulness in YOD. Experiences in the development of the e-learning as well as the practical implementation will be discussed.