It is recognized that people with dementia are likely to need to stop driving at some point following diagnosis. Driving cessation can lead to negative outcomes for people with dementia and their family caregivers (FC), who often experience family conflict and tension throughout the process. Family experiences surrounding driving cessation have begun to be explored but warrant further examination.

Using a descriptive phenomenological approach, semi-structured interviews were undertaken with key stakeholders, including 5 retired drivers with dementia, 12 FC, and 15 health professionals (HP). Data were analyzed inductively to explore the needs and experiences of people with dementia and FC.

The data revealed a range of possible interactions between people with dementia and FC. These were organized into a continuum of family dynamics according to levels of collaboration and conflict: in it together, behind the scenes, active negotiations, and at odds. At the in it together end of the continuum, people with dementia and FC demonstrated collaborative approaches and minimal conflict in managing driving cessation. At the at odds end, they experienced open conflict and significant tension in their interactions. Contextual factors influencing family dynamics were identified, along with the need for individualized approaches to support.

The continuum of family dynamics experienced during driving cessation may help clinicians better understand and respond to complex family needs. Interventions should be tailored to families’ distinctive needs with consideration of their unique contextual factors influencing dynamics, to provide sensitive and responsive support for families managing driving cessation.

Driving cessation has demonstrated impacts on well-being and lifestyle. Despite the recognized reluctance of older people to plan for driving cessation, this study has identified a new group who has a stated plan to stop driving within 12 months. Although gradual reduction of driving has been documented as part of the usual driving cessation, this study explored the differences between retired drivers and those with a stated plan to retire within 12 months in sociodemographic, well-being and lifestyle outcomes.

This study extracted all baseline data from a clinical trial exploring the effectiveness of a group program for older retiring and retired drivers. Sociodemographic data included age, gender, health status, educational level, and living situation. All participants completed measures related to episodes away from home, well-being, and lifestyle. These were compared using parametric and nonparametric statistical analysis.

Participants (n = 131) included 68 retired drivers (mean age 79.8 years) and 63 retiring drivers (mean age 77.8 years). Retiring drivers engaged in more episodes away from home (p = 0.03), and more social activities (p = 0.02), used less alternative transport (p < 0.001), displayed fewer anxiety (p = 0.05), and depressive (p = 0.01) symptoms, but demonstrated lower transport and lifestyle self-efficacy (p = 0.04).

Both retired and retiring drivers require support for driving cessation and community engagement. Retiring drivers may be in a critical position to engage in driving cessation interventions to improve self-efficacy and begin adapting community mobility.

The impact of dementia on safe driving is well recognized and is generally accepted that all people with dementia are likely to need to cease driving at some stage in the disease process. Both driving and driving cessation can have poor outcomes for people with dementia and their caregivers in terms of health, safety, community access, and well-being. Although approaches to facilitate better outcomes from driving cessation are being developed, the processes of driving cessation for people with dementia are still not fully understood.

Within a descriptive phenomenological framework, semi-structured interviews were undertaken with key stakeholders, including retired drivers with dementia, family members, and health professionals.

Findings from four retired drivers with dementia, 11 caregivers, and 15 health professionals characterized driving cessation for people with dementia as a process with three stages and associated challenges and needs. The early stage involved worried waiting, balancing safety with impending losses, and the challenge of knowing when to stop. The crisis stage involved risky driving or difficult transportation, acute adjustment to cessation and life without driving, and relationship conflict. The post-cessation stage was described as a long journey with ongoing battles and adjustments as well as decreased life space, and was affected by the disease progression and the exhaustion of caregiver.

The concept of stages of driving cessation for people with dementia could be used to develop new approaches or adapt existing approaches to driving cessation. Interventions would need to be individualized, optimally timed, and address grief, explore realistic alternative community access, and simultaneously maintain key relationships and provide caregiver support.