Mind the Gap : a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers

Abstract

BACKGROUND AND OBJECTIVES: Care transitions for people living with dementia are critical periods requiring coordinated, person-centered support. Effective transitions can reduce caregiver burden, prevent adverse outcomes, and improve care quality. However, the barriers, facilitators, and lived experiences during transitions remain poorly understood. This systematic review synthesizes evidence on these factors from the perspectives of people with dementia and their informal caregivers. RESEARCH DESIGN AND METHODS: A comprehensive search across MEDLINE, CINAHL, PsycINFO, ProQuest, and Web of Science identified 67 eligible English-language studies published from 2018 to 2023. Quality appraisal used Joanna Briggs Institute tools. The protocol was registered on PROSPERO: CRD42023452669. RESULTS: Four themes captured the barriers, facilitators, and experiences shaping care transitions for people with dementia and their caregivers. Systemic influences included fragmented governance, funding and policy inconsistencies, and structural challenges in care coordination and delivery, mitigated by proactive planning and integrated care. Health and social care workforce factors highlighted gaps in dementia training, staffing, and communication, with empathetic, informed staff improving transitions. Emotions and decision-making reflected caregiver burden, uncertainty, and advocacy, eased by early guidance and peer support. Cultural, social and situational influences showed how values, socioeconomic status, and rurality affected transition choices, underscoring the need for culturally sensitive, person-centered support. DISCUSSION AND IMPLICATIONS: Care transitions remain complex, shaped by systemic, workforce, emotional, and cultural factors. Addressing inequities and coordination gaps is critical for more integrated transitional care. Strengthening dementia-specific training, home-based care models, and culturally responsive communication may improve continuity, person-centeredness, and caregiver support.