Facilitators and barriers to early-stage dementia care: a qualitative study on the perspectives of people with dementia, informal caregivers, and healthcare professionals

BACKGROUND: While timely support can benefit people with dementia and their informal caregivers, the period between recognizing first symptoms and receiving a formal diagnosis is often prolonged. Barriers like stigma, denial, and symptom misinterpretation hinder care acceptance, leaving many without adequate support. This study aimed to (i) explore the needs of community-dwelling people with dementia and informal caregivers; (ii) gain insight into facilitators and barriers for support; and (iii) identify strategies used by healthcare professionals to improve early-stage care acceptance, and whether geographical context influenced this.

METHODS: This qualitative study used a cross-sectional design. We recruited 35 dyads of persons with dementia (mean age 77.7 ± 7 years; 51% female) and informal caregivers (70.0 ± 14 years; 60% female) through daycare centers and memory clinics in the Netherlands. Healthcare professionals (N = 47; 87% female; 38% dementia case manager) were contacted via regional dementia networks. Open-ended questionnaires assessed dyads' experiences and needs, while healthcare professionals participated in semi-structured interviews. Audio-recorded interviews were transcribed. Thematic content analysis was used on all data by two independent coders.

RESULTS: Retrospectively, dyads indicated a strong need for timely knowledge, practical resources, and peer support in the early stage. Dementia case managers were considered crucial for accessing support. Effective strategies for professionals to improve early-stage care acceptance included: community engagement, raising societal awareness through education, a personal approach based on patience and trust, and better collaboration with other organizations to maintain short lines of communication. Barriers included reluctance to seek help, stigma, limited awareness, misalignment of services and needs, bureaucratic complexity, and difficulty navigating the healthcare system. Professionals stressed the need for tailored outreach strategies to both individual needs and local context, given perceived differences between city and rural regions in the effectiveness of strategies and dyads' needs.

CONCLUSION: Our findings suggest that trust-based, relational approaches, characterized by patience, personal contact, and low-threshold access, are central to facilitating early-stage care acceptance. Early-stage support should be made more visible in communities and tailored to individual needs and local context. Reducing stigma and bureaucratic complexity, while strengthening local facilitators, may improve access to timely and meaningful support.