Sleeping with one eye open: lived experiences of informal caregivers regarding nighttime agitation in people with dementia

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Abstract Background Nighttime agitation (NA) is a prevalent and challenging behavioral and psychological symptom of dementia, often resulting in caregiver exhaustion and premature institutionalization of people with dementia (PwD). Despite its impact, informal caregivers’ perspectives on this phenomenon remain underexplored. To date, no study has specifically examined the experiences and reactions of informal caregivers in community settings where PwD not only experience sleep disturbances but also exhibit more complex and disruptive behaviors such as NA. Methods We conducted a qualitative, in-depth interview study using purposive sampling to recruit informal caregivers of community-dwelling PwD experiencing NA in Slovenia. Data were analyzed using reflexive thematic analysis following the model of Braun & Clarke’s six-phase framework. We evaluated thematic saturation iteratively and reached a saturation point at 15 participants, with no new experiential themes emerging from the final three interviews. Results Two overarching themes were developed: caregivers’ experiences of NA and their reactions to NA. Seven sub-themes described caregivers’ experiences, including sleeping with one eye open, emotional toll of stressful nights, perceived necessity of medication, fear for the safety of their loved one, expecting the unexpected, when caring comes at a cost, and external and environmental factors shaping the nights. Eight subthemes captured caregivers’ reactions, including establishing stability through routine, emotional reactivity, medication as the last resort, managing risk through safety solutions, nighttime crisis management, learning the hard way, communication as comfort, and seeking support services. The majority of the themes occurred at a dyadic level between PwD and their caregiver, highlighting the interdependent nature of NA and its management within the caregiving relationship. Findings were further organized within a three-level framework encompassing the PwD, the informal caregiver, and the environment. Conclusion Informal caregivers experience NA as a complex, multifaceted phenomenon extending well beyond a single behavioral symptom. Current non-pharmacological interventions for NA inadequately address the needs identified in this study. Integrative approaches combining sleep and agitation management are urgently needed, alongside targeted caregiver training in communication, safety planning, and crisis response. Caregiver well-being should be recognized as a core outcome, not a secondary consideration, in the development of future nighttime care interventions.

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