Areaalzheimer: development of a digital platform for caregivers based on the results of a needs analysis and mixed-methods pilot evaluation process

Introduction: This study describes the user-centred design and evaluation of AreAreaAlzheimer, a web-based digital platform developed to support family caregivers of individuals with dementia, especially Alzheimer disease. The initiative sought to ensure that technological solutions effectively address caregivers' actual needs through active user participation at every stage of development.

Methods: Following an iterative, participatory design approach, 419 individuals contributed to the project. The first phase combined a survey of 210 caregivers and focus groups with 22 participants to identify priority support dimensions. Thematic analysis highlighted four main areas: informational guidance, logistical assistance, emotional and communication strategies, and peer social connection. Based on these insights, 147 additional participants provided feedback that refined platform features and content. Finally, platform evaluation included standardized usability measures including the Single Ease Question (SEQ) for task difficulty, the System Usability Scale (SUS) for overall usability perception, the Perceived Usefulness Scale (PUS) completed by 40 caregivers, and scenario-based testing with 19 users who discussed experiences and improvement opportunities.

Results: Quantitative findings showed high ratings in accessibility (average score: 4.5/5), usability (scored 74.3/100), and perceived usefulness was rated lower (average score: 3.4/5). Qualitative feedback supported these results, emphasizing the platform's practical value in everyday caregiving. However, participants with lower digital literacy reported persistent challenges, indicating the need for simplified navigation and adaptive interface features.

Discussion: AreAlzheimer demonstrates the potential of participatory design to create inclusive, effective digital health tools for dementia care. Involving caregivers and people living with dementia enriched the design, promoting autonomy and cognitive sensitivity. Future research will integrate these insights into formal scientific protocols to expand participatory digital health innovations in dementia support.