Family Caregivers’ Management of Behavioral Expressions of Dementia

Abstract Background and Objectives Behavioral expressions of dementia are often stressful for family caregivers to manage as they strive to ensure their relative’s needs are met. Guided by Lazarus and Folkman’s Transactional Model of Stress and Coping, we identified specific behaviors that disrupt daily routines and challenge the achievement of caregiving goals, and the approaches and strategies caregivers employ to address them. Research Design and Methods We conducted semi-structured interviews with 30 family caregivers in rural Appalachia caring for a relative living with dementia. Analysis involved use of open and focused coding processes to identify the ways caregivers managed behaviors and bar graphs to examine management approaches relative to categories of behaviors and caregiver demographic and emotional well-being variables. Results Analyses revealed 10 types of behavioral expressions of dementia associated with confusion, irritability, and resistance to engaging in necessary activities of daily living. Caregiver approaches to managing behaviors included gentle persuasion, being harsh by yelling or threatening, being persistent in expecting the person with dementia to complete the tasks at hand, disengaging by postponing the activity, and employing a combination of strategies. Approaches differed across types of behavior and caregiver demographics and had varying effects on caregiver well-being. Discussion and Implications Uncovering specific behaviors family caregivers of persons living with dementia found bothersome, caregivers’ adaptive strategies for managing behaviors, and the impact of those approaches provides new information to inform training on effective dementia caregiving practices and development of targeted intervention programs for dementia care.