Challenges and needs in dementia care: people with dementia and family caregivers' experiences from diagnosis to follow-up in Swedish primary care: a qualitative study.

Abstract

Objective: Primary care plays a central role in diagnosing dementia and coordinating and providing care. This study explores how older people with dementia and their family caregivers experience the process from diagnosis to follow-up in primary care, what support is needed, what works well and what could be improved.

Design: Semi-structured interviews were conducted with four people with dementia and 11 family caregivers in Stockholm, Sweden. Data were analyzed with inductive thematic analysis.

Results: Four themes were identified: Seamless assessment - from primary care to memory clinic, describes the transition from primary care to memory clinics, where empathy and professionalism are crucial to prevent feelings of failure. After diagnosis - a no man's land, highlights a communication gap between memory clinics and primary care that leaves informants feeling abandoned and causes emotional distress and isolation. Follow-up in a deficient primary care, underscores the importance of having 'a single point of entry' for coordinated support and a primary care provider with expertise in dementia. Embracing life with the diagnosis, emphasizes the need for guidance from a dedicated dementia team to manage progression.

Conclusion: People with dementia and their caregivers felt that primary care often failed to meet their needs due to limited accessibility, poor coordination, and a lack of dementia-specific expertise. Strengthening the role of general practitioners, introducing liaison nurses, and enhancing collaboration with municipal services could improve continuity, navigation, and support. These findings underscore the need for Swedish health care policy to promote sustainable, person-centered dementia care models within primary care.