Walking a tightrope: meaningful encounters in the care for people with dementia and severely challenging behavior

This study examines interactions in residential care for people with dementia and severe challenging behavior. Approaching dementia as contextualized, lived experience, it explores how meaningful encounters can be fostered for residents and those directly involved in their life and care.

A phenomenological design informed by Todres' embodied enquiry was employed. Data were collected through intensive shadowing observations (35 hr) over a 2-week period in a Dutch closed long-term care facility accommodating 16 residents. The daily work of 18 paid care workers was observed.

Meaningful interaction emerged as a delicate balancing process, described as walking a tightrope, requiring continuous attunement to both pleasant and distressing dimensions of lived experience. Care workers fostered at-homeness, togetherness, and shared memories, while also acknowledging disorientation, loneliness, grief, and sadness. This balancing act unfolded across four interconnected dimensions: (1) at-homeness versus uncanniness in space, (2) togetherness versus loneliness in relationships, (3) continuous recalibration in embodied attunement, and (4) joy versus sorrow in personal narratives.

While previous research has emphasized the importance of connectedness for meaning in life, this study underscores another crucial perspective: genuine well-being requires sincere engagement with life's darker dimensions, not merely positive reassurance. Meaningful interaction depends on care workers' capacity to remain present with both affirming and unsettling aspects of life. This calls for a relational approach to care that acknowledges distress alongside positive experience, supports agency through doing-with, and employs inclusive, non-corrective communication practices that flexibly integrate clinical and humanistic perspectives.