Care Refusal by Older Adults With Dementia Receiving Professional Care: A Scoping Review

Abstract

Care refusal behaviors by institutionalized older adults with dementia pose significant challenges for professional caregivers in residential care settings. This scoping review mapped the determinants and effects of care refusal in this population. A systematic search of five databases identified 19 studies published between 2013 and 2023. The findings indicated that personal, relational, environmental, and organizational factors influence care refusal behaviors in institutional settings. Cognitive impairment, communication difficulties, elderspeak, unfamiliar institutional environments, and task-oriented care were key determinants. Care refusal compromised health outcomes, disrupted care provision, and exacerbated neuropsychiatric symptoms in residential care facilities. Terminological inconsistencies and methodological limitations were identified as research gaps. Developing standardized terminology and person-centered strategies represents priority areas for coordinated action across policy, practice, and research to address the impact of refusal behaviors while upholding the rights of institutionalized older adults with dementia.