Independence, loss, and social identity: Perspectives on driving cessation and dementia

Abstract

The purpose of this study on driving cessation was to explore the process of coping, decision-making and adaptation through this major life transition. We sought to examine understandings of the emotional responses of drivers and ex-drivers with dementia from the perspective of healthcare providers and family caregivers of persons with dementia. Interviews and focus groups were conducted with several key informant groups: healthcare providers who work with patients with dementia and their families ( N = 10), representatives from organizations that provide services and support for persons with dementia ( N = 6), and family caregivers of drivers and former drivers with dementia ( N = 13). Data analysis involved inductive analytic techniques to generate descriptive and analytic themes from the data. The main themes from the analysis involve the: (1) Loss of independence and disruption to identity connected to emotional responses to driving cessation; (2) Experience of driving cessation as one loss within a series of losses related to dementia; (3) Importance of addressing emotional and identity-related effects in supportive responses to driving cessation; and (4) Support for maintained and adapted roles as a strategy to provide meaning and purpose in the context of driving cessation. Driving cessation can represent a significant disruption to identity, and is closely linked to losses, such as independence, within people's broader experiences of grief and loss associated with dementia. The findings suggest the need for supportive responses that address unique emotion and identity-related aspects of driving cessation for people with dementia and their family caregivers.

Shifting gears versus sudden stops: qualitative study of consultations about driving in patients with cognitive impairment

“…As with any loss, driving cessation may elicit a grief reaction, amplified by the potential changes in independence, status and social interaction 22 33. While GPs are well placed to guide and offer compassionate support to patients through these adjustments,35 we found that their current efforts seem to fall short of patients’ expectations; patient participants requested more empathy and acknowledgement for the impact of driving cessation on their quality of life.…”

“…Findings include GPs’ view of themselves as reluctant regulators13 who ‘hate’ that driving assessment has anything to do with their role,14 15 and frequent uncertainty about their legal and ethical obligations 16–21. Evaluations of patients’ responses to the prospect of driving cessation in the context of cognitive impairment highlight a range of negative emotions, such as anger, frustration and sadness, the disruption to self-identity and fear of loss of independence 22 23. Up to one-fifth of GPs report a patient leaving their practice because of FtD consultations that have gone badly, highlighting just how distressing these consultations can be for patients 21…”

Driving Status and Transportation Disadvantage Among Medicare Beneficiaries

“…Ability to drive is a primary focus of transportation research in the United States, with the main focus on safety issues related to decline in functional, visual, and cognitive status as people age, risk factors for driving cessation, and the transition to nondriving status (Bird et al, 2017; Dickerson, Meuel, Ridenour, & Cooper, 2014; Ross, Freed, Edwards, Phillips, & Ball, 2017; Vivoda, Heeringa, Schulz, Grengs, & Connell, 2017). As the predominant form of daily transportation in the United States, driving fulfills a variety of needs for older adults, such as facilitating social engagement and a need for independence and self-identity, as well as practical needs such as shopping and medical appointments (Chihuri et al, 2016; Sanford et al, 2018). There is also growing interest in expanding access to alternative transportation for older adults such as paratransit services, specialized transportation and shuttle services, and on-demand ride-share services such as Uber (Chaiyachati et al, 2018; Dickerson, Molnar, Bedard, Eby, Berg-Weger, et al, 2019a; MacLeod et al, 2015; Vivoda, Harmon, Babulal, & Zikmund-Fisher, 2018).…”

“…Prior research has identified health factors that increase the risk for driving restriction or cessation, including cognitive impairment, vision loss, diabetes, and heart failure (Croston, Meuser, Berg-Weger, Grant, & Carr, 2009; Dugan & Lee, 2013; Keay et al, 2009; Kowalski et al, 2012; Seiler et al, 2012; Sims et al, 2011; van Landingham et al, 2013). Driving cessation represents a significant life transition that challenges social participation and preservation of self-identity (Sanford et al, 2018). In addition, driving cessation is linked to an increased risk of depression and nursing home admission (Chihuri et al, 2016; Fonda, Wallace, & Herzog, 2001; Freeman, Gange, Munoz, & West, 2006; Ragland, Satariano, & MacLeod, 2005; Windsor, Anstey, Butterworth, Luszcz, & Andrews, 2007).…”

“…A recent study found that the use of public transportation moderated the impact of driving cessation on well-being in a sample of older adults with vision loss and their social partners, although the impact was more evident among the partners than the ex-drivers (Schryer, Boerner, Horowitz, Reinhardt, & Mock, 2019). A qualitative study on driving cessation among older adults with dementia found that caregivers made efforts to engage the individuals for whom they provide care in meaningful social roles and activities to mitigate the negative emotional impact of driving cessation (Sanford et al, 2018).…”