Evolving dementia care: An explorative study on the lived experience of older adults living with dementia in nursing homes using observational and biometric sensor data

Introduction: This study explores the lived experiences of older adults with dementia in Dutch nursing homes, focusing on daily activities and emotional responses. With a growing number of older adults with dementia, gaining a deeper understanding of their lived experience is imperative.

Methods: Using a mixed-method narrative approach involving observations, informal interviews, and physiological monitoring through wearable sensors, the study engaged eight participants in psychogeriatric wards across two Dutch nursing homes. Observations and interviews aimed to provide context to daily activities, while wearable sensors tracked emotional responses through heart rate (HR) and heart rate variability (HRV).

Results: Key activities included eating, drinking, communication, mobility, and inactivity. Positive experiences were consistently observed during eating and drinking and communication, respectively influenced by the nursing home's social and organizational structures and social and personal contexts. In contrast, mobility and inactivity exhibited diverse physiological responses, reflecting a range of stress, concentration, or relaxation.

Conclusion & discussion: This study offers valuable insights into the lived experiences of older adults with dementia in nursing homes. It highlights the generally positive nature of eating and drinking, shaped by social and organizational factors. Communication's impact varies with individual context. The study also reveals a complex interplay of emotions during activities related to mobility and inactivity, as evidenced by diverse physiological responses. Regarding implications for dementia care, the study emphasizes the need to redefine 'inactivity' as 'under-stimulation,' assess appropriate (in)activity levels, and acknowledge the significance of the nursing home's physical and organizational context. This redefinition should distinguish between 'physical' and 'mental' inactivity, address concerns related to under-stimulation, and cater to individual preferences. Recognizing the residents' restricted environment and reliance on care professionals and volunteers underscores the urgency of tailored approaches. Addressing these implications can provide fresh perspectives for evolving dementia care, creating a more supportive environment that promotes well-being.