Navigating Dementia Services: An International Review of Informal Caregiver Perspectives

Dementia is a growing global concern, with informal caregivers, typically unpaid family members or friends, providing essential support to those living with the condition. Despite their central role, these caregivers often face fragmented services, poor communication, and limited guidance. This global review synthesizes findings from 30 qualitative studies to explore informal caregivers' experiences of navigating dementia services. Studies were identified through a comprehensive search of MEDLINE, PsycINFO, and CINAHL and analysed using Thomas and Harden's thematic synthesis method. Only English-language studies were included, and each was critically appraised for quality and relevance. Four central themes were conceptualised in this synthesis. First, caregivers frequently encountered confusing, disjointed systems, exacerbated by inadequate communication and a lack of relational continuity. Second, some services were experienced by carers as harmful, causing emotional strain due to inflexible, under-resourced, or impersonal care. Third, uncertainty about the future was a persistent source of anxiety, often worsened by a lack of professional support in care planning. Finally, cultural and linguistic barriers hindered access to services, pointing to a widespread need for more culturally responsive care. This review underscores significant shortcomings in current dementia service delivery, particularly in coordination, communication, and inclusivity. Despite policy commitments to caregiver support, implementation remains patchy and inconsistent. In some cases, services not only failed to assist but also contributed to caregiver burden. There is an urgent need for system-level changes that place informal caregivers at the centre of dementia care, ensuring services are person-centred, culturally sensitive, and better integrated. Supporting caregivers more effectively is critical to improve outcomes for both those living with dementia and those who care for them.