Background The appalling course of Huntington’s Disease (HD) has a high impact on patients and their relatives. HD often leads to nursing home admission. Thoughts and wishes for the final stage are common in patients. Many patients suffer from intrusive thoughts and suicidal ideation is common. Nursing home admission, end-of-life issues and suicidal ideation may be reflected in informal caregivers’ concerns. Case managers (CMHD) perform a central role in the multidisciplinary care approach in the Netherlands representing both patients and informal caregivers.

Aims To explore the views of CMHD on their professional role in relation to concerns of informal caregivers preceding patients’ nursing home admission with a focus on end-of-life issues and suicidality.

Methods A two-phased qualitative study was performed with twelve CMHD in 2021. Phase 1: six semi-structured individual interviews followed by an interim analysis. Phase 2: two semi-structured focus groups based on the interim results were performed using real-time collaboration facilitated by Padlet®. The collected data were combined and analyzed thematically. Results: Three themes emerged: building a bond of trust; sharing knowledge; and guiding patient and informal caregiver through a bumpy disease course.

Conclusion Concerns are not expressed immediately by informal caregivers and may remain beneath the surface for years, according to CMHD. Building a bond of trust is essential to find out informal caregivers’ needs and concerns. That way CMHD are able to guide patients and informal caregivers through the disease course. Multisided partiality in representing patient and informal caregivers makes CMHD vulnerable in their professional role.