Facilitators and Barriers to Early-Stage Dementia Care: A Qualitative Study on the Perspectives of Persons with Dementia, Informal Caregivers, and Healthcare Professionals

Background: While timely support can benefit persons with dementia (PwD) and their informal caregivers, the period between recognizing the first symptoms and receiving a formal diagnosis is often prolonged. Barriers like stigma, denial, and symptom misinterpretation hinder the acceptance of care, leaving many without adequate support. Identifying strategies to reach PwD earlier and overcome these barriers is crucial. This study aimed to (i) explore the needs of community-dwelling PwD 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. Therefore, we explored the perspectives of all stakeholders involved. Methods: This qualitative study used a cross-sectional design. We recruited 35 dyads of PwD (mean age 77.7±7 years; 51% female) and informal caregivers (70.0±14 years; 60% female) through daycare centres 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 were used to assess dyads’ experiences and needs. Healthcare professionals participated in semi-structured interviews on how to effectively reach dyads. Audio-recorded interviews were transcribed. Thematic content analysis was used on all data by two independent coders to identify key themes. 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-care acceptance included: community engagement and accessibility, increasing visibility through education and awareness, a personal approach based on patience and trust, and better collaboration with other organisations to maintain short lines of communication. Barriers to help-seeking included stigma, lack of awareness, misalignment of services and needs, bureaucratic complexity, and difficulty navigating the healthcare system. Professionals stressed the need for tailored outreach strategies, because of perceived differences between city and rural regions in effectiveness of strategies as well as dyads’ needs. Conclusion: Early-stage support should be made more visible in communities and tailored to individual needs. Reducing stigma and bureaucratic complexity, while strengthening local facilitators, may improve access to timely and meaningful support.