Barriers Facing Direct Support Professionals When Supporting Older Adults Presenting with Intellectual Disabilities and Unusual Dementia-Related Behavior: A Multi-Site, Multi-Methods Study

Introduction: Increased life expectancy among people with intellectual disabilities (ID) raises the risk of their diagnosis being superimposed by behavioral and psychological symptoms of dementia (BPSD). The difficulties facing direct support professionals dealing with this is an emerging, under-investigated issue. The study investigates direct support professionals' perceptions and experiences of their daily support for aging people with ID presenting with superimposed BPSD. Method: Twenty-four direct support professionals from long-term care facilities responded to clinical vignettes and attended focus groups conducted to investigate perceptions and lived experiences of the barriers and struggles they faced. Results: Direct support professionals' reactions to vignettes revealed their difficulties recognizing BPSD superimposed on the known challenging behaviors of people with ID. Focus groups highlighted daily struggles with BPSD, the lack of knowledge about detecting and dealing with them, and associated somatic and psychopathological diseases of aging. Conclusion: Improved knowledge transfer about good practices for person-centered support to aging people with ID presenting with BPSD is strongly recommended.