Author:

Keywords:

ODI#PWO T1 Jong D#P0486 400 N X0#DOSP-ODI-001318, ODI#KA2 Young-D#P0566260NX0#DOSP-ODI-001113

Abstract:

Background When dementia starts prior to the age of 65 years, the symptoms often progress faster than in late onset dementia (diagnosis >65 years). Young onset dementia (YOD) often goes along with increased stress and sleep problems, which affects quality of life. Relaxation exercises such as breathing and mindfulness have been described to help cope with these psychosocial challenges. 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 offer these relaxation exercises to people with YOD. Methods A 6-week behavioral program (JONG-D) was developed and tested by researchers at Odisee University of Applied Sciences (Brussels, Belgium) 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. After a pilot of this program in four day care centers, the researchers from Odisee University of Applied sciences expanded the JONG-D program in co-creation with practical and educational partners from The Netherlands, Denmark and Germany in to an integral YOUNG-D program. In a further stage, this co-created YOUNG-D program has been implemented in three settings for YOD (residential, semi-residential and outpatient). A YOUNG-D trainers’ manual was developed for professional caregivers. Based on this YOUNG-D program, an e-learning was also 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. This project received co-funding of the EU Erasmus+ program. Results and conclusions This European co-creative project resulted in a more tailormade YOUNG-D program to reduce emotional stress and sleep problems in people with YOD. An e-learning was developed 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. The presentation will provide an insight in perspectives and experiences of trainers and people with YOD in the YOUNG-D program as well as avenues for future research and collaboration.