'It is empowering and gives people dignity in a very difficult process': A multistage, multimethod qualitative study to understand the views of end users in the cultural adaptation of a dementia and driving decision aid

Abstract

Background: Decisions about driving for individuals living with dementia (ILWD) can be challenging. There are limited evidence-based person-centred interventions in the United Kingdom that support decisions about transitioning to not driving or guidelines for developing decision aids for ILWD. This study aimed to understand the important features of a decision aid through the cultural adaptation of Australian dementia and driving decision aid (DDDA) for ILWD residing in the United Kingdom.

Methods: This qualitative study was theoretically underpinned by a person-centred framework and conducted over three stages: (1) Development of a draft UK-specific DDDA; (2) semistructured interviews with ILWD and an online survey with stakeholders to obtain their views on a draft UK DDDA and (3) content analysis and synthesis of qualitative data to inform the final version of the decision aid.

Results: Eleven ILWD and six of their spouses participated in interviews, and 102 stakeholders responded to an online survey. The four broad features identified as important to include in a decision aid for drivers living with dementia were: a structured and interactive format; positive and supportive messaging and presentation; relevant and concise content and choice-centred. The perceived benefits of the decision aid were identified as supporting conversations, enhancing collaborative decision making and enabling agency with decisions about driving and future mobility options.

Conclusions: Decision aids that are underpinned by interactive choice-driven questions enhance a person-centred approach to decisions about driving. Positively framing decision aids through the presentation and content can facilitate engagement with the decision-making process about driving. The findings have implications for the development of decision aids designed for ILWD on other important health and social topics.

Patient and public involvement: Advocating for the development of a UK DDDA were ILWD. Healthcare professionals contributed to the development of a draft UK DDDA. Former and current drivers living with dementia, family members, healthcare professionals and other support networks of ILWD participated in interviews or an online survey which informed the final version of the UK DDDA.

Keywords: Alzheimer's disease; decision aid; dementia; driving; person-centred; shared decision making.