JMIR Publications

ABSTRACT

Background:

Dementia is a progressive, life-limiting condition in which care needs evolve from diagnosis through end of life, yet advance care planning (ACP) is often approached as a narrow, document-focused end-of-life task. Digital ACP tools could help integrate ACP with earlier palliative care principles, but priorities for a comprehensive dementia-specific tool remain insufficiently defined.

Objective:

To identify and prioritize stakeholder-defined components and digital features for a comprehensive digital ACP (dACP) tool for dementia that integrates palliative care principles across the disease trajectory.

Methods:

We conducted an online survey with people with dementia, informal caregivers, and health care professionals recruited via Prolific in January–February 2025. Participants rated the importance of dementia-tailored ACP elements, caregiver-support features, preferred frequency of care-plan review prompts, and the importance of integration with existing health care systems; open-ended responses were analysed using thematic analysis supported by a large language model and refined by researchers. Principal component analysis was used to derive core domains, and group differences and correlations among central variables were assessed.

Results:

The final sample included 232 participants. PCA identified two interrelated ACP domains, the Comprehensive Care Planning and End-of-Life Preparation and Active Disease Symptom Management and a caregiver domain capturing Caregiver Stress Management. Across items, strategies for maintaining quality of life as dementia progresses received the highest ratings. Tips for managing challenging behaviours were the highest-rated caregiver-support feature. Participants also rated integration with existing health care systems as highly important and were in favour or context aware regular plan review. Qualitatively, decision-making support and guidance, communication/information sharing and documentation/record-keeping were the most frequently cited primary purposes of a dACP tool across all groups.

Conclusions:

Stakeholders prioritized a dACP tool that supports quality of life, ongoing symptom management, and actionable caregiver support, with strong interoperability to enable clinical use across care settings. These results provide practical design targets for developing an integrated, adaptive tool to support shared decision-making and continuity of person-cantered early palliative care in dementia.