Sleeping with One Eye Open: Lived Experiences of Informal Caregivers Regarding Nighttime Agitation in People with Dementia

Abstract Nighttime agitation (NA) is a prevalent and challenging phenomenon affecting people with dementia (PwD), often resulting in premature institutionalization. Yet, informal caregivers’ perspectives on this phenomenon remain underexplored. We conducted 15 in-depth interviews with informal caregivers to gain insight into their experiences and reactions to NA. Thematic analysis identified seven sub-themes related to carers’ experience and eight sub-themes concerning their reactions. These themes emerged across three levels, namely, PwD, informal caregiver and the environment. Most phenomena occurred at a dyadic level between PwD and informal caregiver, highlighting the potential of interventions targeting dyadic coping. Informal caregivers feel insufficiently supported when sleep disturbances co-occur with NA. They primarily rely on self-initiated strategies and learn by experience. Caregivers mention the need for more advanced knowledge and skills in reacting to co-occurrence of sleep disturbances with NA or systemic support in terms of dealing with emergencies. Caregivers also reflect extensively on the impact of challenging behaviors during the night on their mental and physical well-being. Notably, no non-pharmacological interventions for NA adequately address the themes identified in this study, highlighting the urgent need for integrative approaches and recognition of caregiver wellbeing as a core outcome, not a secondary consideration in interventions.