Implementation and evaluation of a driving cessation intervention to improve community mobility and wellbeing outcomes for people living with dementia: Study protocol of the 'CarFreeMe' for people with dementia program

Abstract

Background: Giving up driving is a pivotal life event and universal challenge for people living with dementia and their families, and a complex area of clinical practice for health professionals who monitor driving cessation. The best outcomes are for individuals to plan for and eventually cease driving, however with insufficient support programs in place, many avoid the issue until it is reaches a crisis point. This program of research investigates a comprehensive support- and education-based intervention targeted at people living with dementia and their care partners who are managing driving cessation. The primary aim of this research is to determine the effectiveness of the program through a cluster randomized controlled trial. Methods/design: The intervention (CarFreeMe) is an intensive program delivered by a trained health professional that addresses practical and emotional needs relevant to driving cessation. The seven module program is person-centred, covering awareness raising, adjustment, and practical support that is individualized according to geographic location and the particular goals and preferences of participants. A cluster randomized controlled trial will evaluate the effectiveness of the program. Evaluation will take place pre-intervention, immediately following, and three months post-intervention. Clusters are randomized to either intervention or usual treatment. Participants within clusters will be recruited via primary and secondary care clinics, community agencies, service providers, local media, social media, support groups, and word of mouth. The primary outcome measure for persons with dementia and their care partners is lifespace, collected via (i) smartphone GPS technology and (ii) self-reported number of episodes away from home (during the past week). Secondary outcomes include safe alternative transport status, wellbeing, depression, anxiety, and self-efficacy, which will be collected from dyads. Caregiving strain will be collected from care partner/family member only. A process evaluation of the intervention will also be undertaken. Discussion: There is an urgent need for therapeutic approaches to supporting people living with dementia and their families to negotiate the complex decision making involved in deciding to change their approach to driving. The driving cessation intervention may fill an important gap in service delivery to people living with dementia who are adjusting to life without driving.