Dena Sommer, MD, FRCPC1,2, Elaine Stasiulis, PhD1, Mark J. Rapoport, MD, FRCPC3,4, Patti Kelm, MA5, Gary Naglie, MD, FRCPC6,7 on behalf of the Canadian Consortium on Neurodegeneration in Aging Driving and Dementia Team
1Baycrest Health Sciences, Toronto, ON;
2Department of Medicine, University of Toronto, Toronto, ON;
3Sunnybrook Health Sciences Centre, Toronto, ON;
4Department of Psychiatry, University of Toronto, Toronto, ON;
5Alzheimer Society of Saskatchewan, SK;
6Department of Medicine and Rotman Research Institute, Baycrest Health Sciences, Toronto, ON;
7Department of Medicine and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ONDOI: https://doi.org/10.5770/cgj.28.819
ABSTRACT
Driving cessation is an expected eventuality in dementia care that has significant consequences for people with dementia (PWD) and care partners (CPs) alike. In collaboration with the Alzheimer Society of Saskatchewan, we explored CPs’ experiences of the driving cessation process. Using an online survey including closed- and open-ended questions, we collected data from 44 CPs of current drivers and from 207 CPs of former drivers. Our quantitative and qualitative analyses identified three key findings. First, although CPs want and expect regulatory bodies and medical practitioners to be involved in the driving cessation process, their involvement is often less than anticipated. Second, driving cessation poses unique challenges to CPs in rural areas given the centrality of driving in smaller communities and limited transportation options to access services. Finally, CPs of former drivers found several positive benefits from the driving cessation process that were unanticipated. In conclusion, these three areas represent opportunities for education, support, and resources for PWD, CPs, and professionals through the driving cessation process.
Key words: dementia, driving cessation, care partners, medical practitioners, regulatory bodies, rural, positive benefits
The process of driving cessation is recognized as a significant challenge for people living with dementia (PWD), their care partners (CPs) and health-care providers.(1) In this process, CPs assume a myriad of roles including decision-making about driving, navigating the licencing regulatory system, providing alternative transportation, and managing the emotional impact of driving cessation for the PWD.(2–4) Although the significant care responsibilities, and emotional and psychological consequences of driving cessation on CPs are well-documented,(3–11) further understanding of their support needs, particularly for people living in rural areas, is needed.(5,6) In collaboration with the Alzheimer Society of Saskatchewan (ASOS), we aimed to explore CPs’ experiences throughout the driving cessation process in a mixed rural and urban population. In Saskatchewan, licence renewals are required every five years, and changes in medical conditions, such as dementia, must be reported at the time of renewal. Physicians and other health-care professionals are required to report to the provincial driving authority any drivers who have medical conditions that may affect their driving. We also planned to assess gender differences in our findings, based on previous research.(12)
In December 2020, the ASOS distributed online surveys to two groups: CPs of PWD who were currently driving, and CPs of PWD who were no longer driving. The two surveys included the same questions with minor wording changes for applicability to each group. Ethics approval was obtained from the Baycrest Academy for Research and Education (REB#21-31).
The surveys (see Appendices A and B) were hosted on SurveyMonkey® and distributed via a weblink to 1,258 CPs in the ASOS client database and via an open call invitation on the ASOS Facebook page. Participation was voluntary. Due to survey distribution methods, the number of recipients is unknown and the survey response rate could not be calculated.
Baseline characteristics, open- and closed-ended responses, and multiple select questions explored four areas related to driving cessation: 1) challenges and concerns, 2) supports received, 3) needs/gaps, and 4) life impact.
Baseline characteristics and closed-ended responses were analyzed using descriptive statistics. Differences between groups and gender differences were analyzed with Chi Square and Fisher’s exact tests using SAS software, V9.4 (SAS Institute Inc., Cary, NC). Free-text survey responses were independently coded by two investigators (DS, ES) using NVIVO software, V12 (QSR International (Americas) Inc., Burlington, MA). Thematic analysis was performed using an inductive approach as described by Braun and Clarke.(13) Coding was compared between researchers and iteratively refined until consensus was reached.
A total of 251 completed surveys were received, including 44 from CPs of current drivers with dementia, and 207 CPs of former drivers with dementia. Most CPs of current and former drivers with dementia were women, aged 60 years or older, and just over half identified as the spouse of the PWD. More CPs of PWD who continued to drive lived in smaller communities (< 20,000 residents) than CPs of former drivers (52.3 vs. 31.5%, p=.01) (Table 1). An equal number of participants reported that the PWD had stopped driving one to three years ago (41.09%) and greater than three years ago (41.09%). Driving cessation had stopped for 16.83% of PWD less than a year ago, and 0.99% indicated they were unsure as to when the PWD stopped driving. Most PWD no longer driving (67.01%) stopped driving either because a physician told them to, they failed a road test, or were required to by the driving regulator.
Analysis of the closed-ended questions revealed two key differences in survey groups regarding decision-making responsibility and positive outcomes from driving cessation (Table 2). CPs of current drivers with dementia largely expected family doctors (70.5%) to be involved in decision-making, followed by regulatory bodies (52.3%), and medical specialists (34.1%). The actual involvement of others in the driving cessation process was less frequent among CPs of former drivers than was anticipated by CPs of current drivers: family doctors (34.0% vs. 70.5%; p<.0001) and regulatory bodies (30.5% vs. 52.3%; p=.0083). When asked if anything postive had come from or was anticipated to come from driving cessation, CPs of former drivers were more likely to identify something positive (56.9%) than CPs of current drivers (36.1%, p=.0171). Analysis by gender did not reveal any significant effects.
TABLE 2 Selected survey questions
Through our analysis of the open-ended questions, we identified the following three key themes, which reflected the responses above (see Table 3 for exemplar quotes).
CPs of current drivers with dementia provided few comments about medical and regulatory involvement in the driving cessation process, in contrast with CPs of former drivers, who emphasized their importance. Having a physician make the recommendation to stop driving and/or connect the PWD to the driving authority for a driving assessment was immensely helpful in addressing driving cessation. It meant averting “chaos” and lessening potential blame on the CP. Other CPs of former drivers reported that support from the medical/regulatory community was lacking, indicating, for example, that physicians were “hesitant” to contact the licensing organization, who were also deemed “unhelpful”. Overall, involving both physicians and the driving authority was frequently mentioned as a recommendation to ease the decision-making and transition to non-driving for CPs and drivers with dementia.
CPs of current drivers expected that they would feel a sense of relief after driving cessation in knowing that the PWD was safe. While feelings of relief were echoed by CPs of former drivers, they also described other, unexpected positives, such as savings on gas and car insurance, and a strengthened relationship through increased quality time spent with the PWD. Several CPs talked about driving cessation as a moment to recognize that the PWD needed more help, facilitating access to care and support. Some felt they gained control over a previously out-of-control situation, and experienced an improved quality of life post-driving.
Driving was noted to be particularly integral to life in rural areas as a means of accessing the community and maintaining independence. Both groups of CPs frequently mentioned rural driving cessation challenges, which included the lack of alternative transportation options. CPs of former drivers described the stress of being the sole driver over long distances, with some relocating to the city to access services. However, CPs of current drivers also described feeling comfortable with the PWD driving in their small community, despite declining abilities.
Among the multifaceted implications of driving cessation, we highlight three notable areas in the CP experience. First, although medical and regulatory authorities are expected by CPs to play an important role in the decision-making process regarding driving cessation, our findings suggest that in practice their involvement is relatively low. Quantitative results indicate a marked difference between CPs of current drivers’ anticipation of family doctors’ involvement and their actual involvement as reported by CPs of former drivers. Qualitative results reveal a wide range of engagement with family doctors, health specialists and driving authorities, from no contact at all to support that significantly eased the decision-making and transition process. This inconsistency in family doctors’ responses and lack of driving safety conversations has been documented elsewhere(14,15) and points to their discomfort and subsequent avoidance of driving cessation. Contributing factors include a lack of familiarity with driving assessments, legislative requirements and processes, and how to offer support, as well as fears of impacting the doctor–patient relationship.(16,17)
The immense relief and helpfulness reported by CPs when health-care providers and regulators were involved in the driving cessation process is consistent with previous research documenting CPs’ awareness of changes in driving skills, but inability to address these changes personally.(10,18) The advice of these professionals not only carries more weight, but may also help CPs preserve their relationship with the PWD by shifting anger and blame away from CPs.(7) The frustration documented by CPs who did not receive support highlights the importance of system-level engagement in driving cessation decision-making, and the need to educate primary care providers about this issue.(16) In addition, CPs’ references to requiring more support and involvement from driving regulators (e.g., clarity about driving assessments and reporting processes), highlight the need to broaden the role of driving regulatory bodies.(14,16)
Given the largely negative view that the loss of driving privileges holds for PWD and CPs,(14,18) our second notable finding was the unexpected positive outcomes of driving cessation reported by CPs of former drivers. Similarly, a recent study also found that PWD who had stopped driving reported more positive impacts from driving cessation than PWD who were still driving.(18) In addition to reductions in stress and anxiety, participants in the current study described financial and relationship benefits, as well as decreased caregiving burden. Highlighting these positive benefits to affected individuals and the general public may help minimize negative associations and normalize driving cessation.(14)
Finally, the challenges of driving cessation in rural areas were notable in our data, as a large proportion of participants resided in rural communities. The lack of available alternative transportation was reported to be a major burden, marking the unique significance driving holds in rural communities,(19) where public transportation options are limited or non-existent.(3,5) These challenges may contribute to some rural primary care providers’ reluctance to discuss driving cessation or refer drivers for evaluation.(20) For PWD living in rural communities, the potential need to relocate should be considered early in planning for driving cessation.
Study limitations include the smaller number of respondents supporting PWD still driving compared to CPs of former drivers, and the small number of men, which may have limited our power to identify significant gender differences. The results are exploratory and based on a convenience sample, with no sample size calculation, power analysis or correction for multiple comparisons.
The driving cessation process involves significant challenges for PWD and CPs. However, increased involvement from medical providers, clear information from regulators, a focus on the potential positives from driving cessation, and increased support for people in rural communities, present opportunities for improvements in the process, as well as for further study.
We thank the participants for their time and contribution in completing the surveys. We are also grateful to Dr. Sandra Gardner for her statistical support via the Kunin-Lunenfeld Centre for Applied Research & Evaluation. Finally, we thank the Alzheimer Society of Saskatchewan for their collaboration.
We have read and understood the Canadian Geriatrics Journal’s policy on conflicts of interest disclosure and declare that the authors have no conflicts of interest.
This work was supported by the Canadian Consortium on Neurodegeneration in Aging (CCNA; Grant number CNA-163902). The CCNA is supported by a grant from the Canadian Institute of Health Research with funding from several partners. The CCNA provided funding that supported ES, but did not participate in study design, data analysis and interpretation or manuscript drafting. SGI also provided financial support for the development of a Driving Cessation Strategy, which allowed for the Alzheimer Society of Saskatchewan to consult people with dementia and care partners on their perspectives of driving cessation. SGI was not involved in study design, data analysis and interpretation, or manuscript drafting.
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Correspondence to: Gary Naglie, MD, FRCPC, Department of Medicine and Rotman Research Institute, Baycrest Health Sciences, 3560 Bathurst S., Toronto, ON M6A 2E1, E-mail: gnaglie@baycrest.org
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This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial No-Derivative license (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits unrestricted non-commercial use and distribution, provided the original work is properly cited.
Canadian Geriatrics Journal, Vol. 28, No. 3, SEPTEMBER 2025