Accompany Caregivers to Optimize Learning With People Living With a Major Neurocognitive Disorder: a Qualitative Study

Abstract Background For caregivers of people living with major neurocognitive disorders (MNCD), adapting methods optimizing learning to a specific situation can be challenging. These methods based on preserved cognitive skills such as procedural memory and implicit recuperation process include errorless learning, spaced retrieval, motor encoding and vanishing cues. This study aimed 1) to obtain a better understanding of factors influencing caregivers’ use of methods optimizing learning, 2) codevelop workshops, a decision tool and accompanying material to support the method’s application based on caregivers needs 3) evaluate the perceived effects of workshops on the application of these methods. Methods The first version of the workshops consisted of five - 2 hours meetings. A qualitative methodology with semi-structured individual interviews was adopted. In addition, individual written and collective verbal feedback were collected after each of the group workshop meetings to continuously improve the workshops. A total of 11 caregivers and three healthcare workers gave feedback after each workshop and were interviewed after the last workshop. All the interviews were recorded and transcribed verbatim for the analysis. Thematic content analysis was conducted. Results The results showed many facilitators (e.g., ability of the teacher to adapt methods to specific real situations, help to identify person’s capabilities) and barriers (e.g., fluctuation of MNCD symptoms, caregivers' precarious health status) for caregivers’ understanding and utilization of the methods. A decision tool for the utilization of methods optimizing learning was developed and adjusted based on feedback from the participants. Also, positive effects of the workshops were found on caregivers’ everyday life, their preparedness and their relationship with the person living with MNCD. Conclusion This study provided a comprehensive understanding of factors influencing caregivers’ understanding and utilization of methods optimizing learning. According to our findings, providing workshops and co-constructed tools to caregivers generate perceived benefits and support their utilization of methods optimizing learning to help them maintain the autonomy of their loved one living with MNCD. Trial registration This study was approved (MP-31-2-19-3211) by the Research Ethics Committee of the Centre intégré universitaire de santé et des services sociaux (CIUSSS) de l’Estrie – Centre hospitalier universitaire de Sherbrooke (CHUS).