Losing hope or keep searching for a golden solution: an in-depth exploration of experiences with extreme challenging behavior in nursing home residents with dementia

BACKGROUND: Situations of extreme challenging behavior such as very frequent and/or severe agitation or physical aggression in nursing home residents with dementia can be experienced as an impasse by nursing home staff and relatives. In this distinct part of our WAALBED (WAAL-Behavior-in-Dementia)-III study, we aimed to explore these situations by obtaining the experiences and perspectives of nursing home staff and relatives involved. This can provide a direction in providing tools for handling extreme challenging behavior of nursing home residents with dementia and may improve their quality of life. METHODS: Qualitative multiple case study with individual interviews and focus group discussions. Interviewees were elderly care physicians, psychologists, care staff members, unit managers and relatives (n = 42). They were involved with nursing home residents with dementia and extreme challenging behavior living on dementia special care units in the Netherlands. For these residents, external consultation by the Centre for Consultation and Expertise was requested. Audio-recordings of the interviews were transcribed verbatim and analyzed with thematic analysis, including conventional content analysis. RESULTS: Seven cases were included. Forty-one individual interviews and seven focus group discussions were held. For six stakeholder groups (resident, relative, care staff, treatment staff, nursing home staff, and the organization), three main factors could be identified that contributed to experiencing a situation of extreme challenging behavior as an impasse: 1) characteristics and attitudes of a stakeholder group, 2) interaction issues within a stakeholder group and 3) interaction issues among (groups of) stakeholders. The experienced difficulties with the resident’s characteristics, as well as suboptimal interdisciplinary collaboration and communication among the nursing home staff are remarkable. Nursing home staff kept searching for a golden solution or lost hope. CONCLUSIONS: This study offers important insights into situations of extreme challenging behavior in nursing home residents with dementia and offers caregivers targets for improving care, treatment and interdisciplinary collaboration, such as working uniformly and methodically. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-022-03438-0.