Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype

Abstract

Clinical decision aids around long-term care can help support persons living with dementia (PLWD), family care partners, and healthcare providers navigate current and future care decisions. This study describes the iterative development of a long-term care planning dementia decision aid and explores care partner and geriatric providers’ insights regarding its acceptability and usability. Using a convergent parallel mixed methods design, we gathered surveys and completed interviews with 11 care partners and 11 providers. The quantitative and qualitative data were then converged, resulting in four findings: (1) helpfulness of the decision aid in supporting future care planning; (2) versatility of the decision aid in practice; (3) preferences for structure and content of the decision aid; and (4) perceived shortcomings of the decision aid in decision making. Future work should continue to refine the decision aid, pilot implementation, and evaluate potential effects on decision making as part of dementia care.