Towards an interactive web tool that supports shared decision-making in dementia: identifying user requirements

Introduction To support shared decision-making in care networks of people with dementia, an interactive web tool for people with dementia, informal caregivers, case managers and other professional caregivers is being developed. This study aims to identify user requirements for such a tool. Design and Methods A multiple method study with an iterative, participatory design was conducted. Data collection involved 50 semi-structured interviews with end users (people with dementia, informal caregivers, case managers and other professional caregivers), eight focus group interviews with end users and experts, a dementia expert consultation, and two multidisciplinary workshops. Results Content analysis was applied to the data and resulted in two sets of user requirements for the interactive web tool. The first set of user requirements consists of care and well-being related topics addressing decision-making in dementia. Most important topics are care, daily activities, mobility, safety, future, finances, living, and social contacts. The second set of user requirements addresses additional needs and preferences of end users such as: participation of the person with dementia in the decision-making, insight into the decision history, anticipation of possible future problems and decisions, and the degree of self-management and autonomy preservation of the person with dementia. Conclusions The two sets of user requirements form a solid basis for the further development of a user-friendly, interactive web tool facilitating shared decision-making in care networks of people with dementia.