Samenvatting

Background Early onset dementia (EOD) presents unique challenges, particularly in managing anxiety, stress, and sleep disturbances. Within the Young-D project, the project partners developed workshop programme for people with EOD, with the aim to address these issues. The Young-D programme was piloted in three healthcare organisations, one in Belgium, one in the Netherlands and one in Denmark. All trainers were experienced with the target group and familiar with the program participants. Gaining an understanding of their perspectives and experiences can offer valuable insights into the effectiveness of the interventions and highlight areas for improvement.MethodsThis study employed semi-structured, qualitative in-depth interviews with trainers from the Young-D program. The interviews were conducted by two nursing students during a research semester at the end of their Bachelor of Nursing program at Hanze University of Applied Sciences Groningen in the Netherlands. The interviews were conducted using a pre-drafted interview guide, and all interviews were transcribed. The qualitative data were analyzed using a deductive thematic analysis approach. ResultsUltimately, four of the five trainers were interviewed. All trainers emphasized that their experience with people with EOD was essential for the success of the sessions. Building a relationship of trust with clients was crucial, as good group dynamics enhance interaction.Although the trainer's manual contains a wealth of information, some trainers found it confusing and felt it lacked practical details. The freedom to tailor sessions to the needs of the group was highly appreciated, despite the time-consuming preparation involved. The use of various materials and a positive environment contributed positively to the sessions. Evaluating the program with participants proved challenging due to clients' memory problems and limited recollection of the sessions. The trainers recommend closer collaboration with informal caregivers to improve the program's effectiveness for people with EOD.Conclusion The trainers' experiences with the YOUNG-D program were generally positive. However, they emphasized the importance of adapting various elements of the program to achieve greater success in the interventions. The findings suggest that improving the manual, providing additional training, and fostering closer collaboration with informal caregivers are crucial steps to enhance the feasibility and usability of the YOUNG-D program. RecommendationsIt is recommended to maintain the flexibility to adjust the Young-D program to the specific situations and characteristics of the target group. Additionally, the program trainer manual should be clarified and supplemented with important guidelines, advice, and practical tips. It is crucial to adjust the sleep session and develop closer collaboration with informal caregivers and other healthcare providers to ensure continuity of care and better evaluate the interventions' impact on people with EOD.Further research is recommended to explore the benefits of these types of programs and non-pharmaceutical interventions for people with EOD and their informal caregivers, and to identify best practices for implementation.