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Reaching a threshold to stop driving:

Lived experiences of people with dementia and their family caregivers

DARTS 2026

January 10, 2026

KJ Hansmann, MD, MPH, PhD

Assistant Professor (Tenure Track)

Family Medicine and Community Health

School of Medicine and Public Health

University of Wisconsin

Collaborators at University of Wisconsin:

Jane Evered, PhD, RN

Anthony D. McDonald MS PhD

Alyssa Turnquist

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I have no potential conflicts of interest to disclose

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Disclosures

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Dementia and Driving Risk

Camilleri & Whitehead, Aging and Disease, 2023;14(3): 621-651.

Chee et al., Am J Geriatric Psychiatry, 2017;25(12): 1376-1390

Barco et al., JAGS, 2015;63(7): 1373-1380

Figure from Toepper & Falkenstein, JAGS 2019;67(10): 2186-2192

In previous studies, over half of drivers with Alzheimer’s dementia failed on-road tests

Common driving deficits observed with dementia:

Forgetting to fasten seatbelt
Difficulty with driving maneuvers
Difficulty identifying landmarks and traffic signs, following rules of the road

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Current Norms

Decisions made because of crisis

Family/friends making the decision

Decreased quality of life

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Driving and Dementia

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Chihuri et al., JAGS 2016;64(2): 332-341.

Ratnapradipa et al., J Gerontol B Psychol Sci Soc Sci 2020;75(10): 2263-2267.

Liddle et al., International Psychogeriatrics 2013;25(12): 2033-2046.

Social and Health Consequences

Social isolation

Depression

Cognitive decline

Decreased physical function

Notes

Everyone with dementia is expected to stop driving at some point. While this end point is clear, the lived experience of deciding when to stop driving and navigating ways to maintain community mobility after stopping is not widely reported in the literature and can be complicated.
In previous interviews with clinicians, caregivers, and people with dementia, researchers identified three stages of driving cessation including (1) worried waiting, (2) an acute adjustment in response to a crisis, near-crisis, or potential crisis, and (3) a “long journey” after the crisis stage (Liddle et al., 2013). One limitation of this previous work is that by not disaggregating the perspectives of clinicians, caregivers, and people with dementia, the analysis may not have elucidated all the dimensions of driving decision experiences.

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Family Caregivers and Driving

Family caregivers play a pivotal and time-consuming role in caring for people with dementia

Transportation support is more complex than just giving people rides

Evidence is mixed on caregivers’ ability to predict driving fitness. Possible limitations:

lack of awareness of how dementia impacts driving behavior

logistical worries

unsure how and when to act on concerns

Brown et al., (2005). J Am Geriatr Soc

Camilleri et al., (2023). Aging Dis

Hansmann et al., (2024). J Gerontol B Psychol Sci Soc Sci

Koumoutzis et al., (2022). J Appl Gerontol

Family caregivers play a pivotal and time-consuming role in caring for people with dementia

Transportation support is more complex than just giving people rides

Notes

Family caregiver is a term that can encompass spouses, partners, siblings, adult children, friends, neighbors, and others in one’s close social support network

Family caregivers are well-positioned to notice the first signs of changes in a person with dementia’s driving ability and recognize developing patterns of unsafe driving (e.g., minor motor vehicle crashes, difficulty navigating familiar routes, abrupt lane changes).

Despite these opportunities for early observations about changes in driving ability, more than two decades of research has suggested mixed results in caregivers’ ability to assess fitness to drive for people with dementia.
For example, a recent study found that while more than one-third of caregivers expressed concerns about the driving abilities of their family members or friends with dementia, the caregivers had not yet intervened on the person with dementia’s driving behavior.

The interpretive framework caregivers use to assess a person with dementia’s driving ability and how to respond is complex and understudied.

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Objective

To characterize opportunities and challenges for discussing stopping driving by eliciting the experiences of a diverse cohort of older drivers and former drivers with dementia and their family caregivers

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Methods

Recruitment:

Community events hosted by Wisconsin Alzheimer’s Institute in Milwaukee (urban) and Stevens Point (rural)
Wisconsin Alzheimer’s Disease Research Center Care Research Registry

Inclusion Criteria:

Caregivers of a family member or friend with a dementia diagnosis AND who had been driving at the time of diagnosis

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Methods

Data Collection: Semi-structured interviews

Conducted via Zoom by two interviewers between July 2024 to April 2025

Data Analysis: Thematic analysis

Conducted concurrently with data collection
Inductively derived coding scheme
Abductive approach to generating themes

Braun & Clarke. (2006). Qualitative Research In Psychology

Timmermans & Tavory. (2022). Data Analysis in Qualitative Research

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Characteristics of Participants

Types of Participants

Family Caregivers = 15
People with Dementia = 5
(Dyads = 5)

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Characteristics of Participants

Types of Participants

Family Caregivers = 15
People with Dementia = 5
(Dyads = 5)

Participants’ Gender

Women = 15
Men = 5

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Characteristics of Participants

Types of Participants

Family Caregivers = 15
People with Dementia = 5
(Dyads = 5)

Participants’ Gender

Women = 15
Men = 5

Participants’ Race

White = 15
Black = 5

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Overview of Themes

Participants described different timelines for stopping driving

Participants described reaching a threshold for stopping driving on these different timelines

Contextual factors informed timelines for stopping driving

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Theme #1: Reaching a Threshold

“I had […] tested it. I went out with her in the car.”

“So we just sort of…weaned her off driving over time.”

- Joseph

Son of a former driver with dementia

*

Dementia diagnosis

Threshold

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Theme #1: Reaching a Threshold

“She said ‘I didn’t do anything wrong. I didn’t have any accidents. I didn’t have any tickets that I had to pay.’”

– Lisa

Daughter of a former driver with dementia

*

Dementia diagnosis

* Getting lost

Threshold

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Theme #1: Reaching a Threshold

“[Her getting lost] was just a shock to me. I had no idea to expect that”

– Paul

Husband of a former driver with dementia

*

Dementia diagnosis

Threshold

* Getting lost

* Near miss

* Getting lost

“[The near miss] scared the daylights out of me.”

– Susan

Former driver with dementia

Notes

Not everyone knew to monitor/evaluate, which led to a more abrupt process of reaching the threshold
Paul’s wife also participated in an interview. She shared that her first memory of driving problems was getting lost while her grandchildren were in the car with her and driving for nearly an hour before finding her way home. She didn’t tell her husband about that “for a while”
She described getting lost again on another routine trip by herself, but eventually recognizing a landmark. After that instance, she told her husband right away.
She saw her doctor after these two events who strongly encouraged that she stop driving, but ultimately what pushed her over the edge was that she was dropping another granddaughter off at school and stepped on the gas while her car was in park in the drop-off line instead of putting her foot on the break to put it into gear.

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“I don’t care whether he gets lost or not. It’s…what he’s gonna do to other people on the road.”

– Patricia, wife of a former driver with dementia

“My mom’s incident wasn’t enough to really strip her of her driver’s license because there was no damage and getting lost is not a big deal.” – Debra, daughter of a former driver with dementia

Theme #1: Reaching a threshold

“I think, and [my wife] thinks, that my driving has not suffered.”

– Charles, current driver with dementia

“I hate to say that I’ve been keeping a list.”

– Carolyn, wife of a current driver with dementia

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Theme #2: Contextual factors

Always Passenger:

It was “kind of a natural progression…she didn’t put up too much resistance to it either.”

- Bruce, husband of a former driver with dementia

Always Driver:

“One day [my wife] told me to get out of the driver’s seat and get in the passenger seat.”

- Robert, former driver with dementia

Notes

Briefly summarize Environmental, Social, Driver Experience

What stood out was the importance of Passenger Experience for some participants

Bruce, a caregiver, described how prior to his wife’s dementia diagnosis he was usually the driver and when it was time for his wife to stop driving it was  “kind of a natural progression...she didn’t put up too much resistance to it either.” 
Conversely, when Particia, a caregiver for her husband with dementia, described their driving patterns before his diagnosis, she noted that if they were both in the car that she was almost always the passenger. When her husband, Robert, described his experience of stopping driving he jokingly summarized it, saying: “one day [my wife] told me to get out of the driver’s seat and get in the passenger seat.”
In other instances, whether or not the person with dementia had before been the passenger or the driver on a trip with their caregiver had been decided case-by-case.

Particularly for participants who described that the person with dementia was almost always the passenger or almost never the passenger when someone else was in the car, this passenger experience was associated with the extent to which stopping driving was a fundamental change in the person with dementia’s identity related to driving.

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Limitations

Small sample

Nearly all participants were reporting on past events (for some >6 years in the past), creating recall bias or changes in perspective with time

Interview guide did not explicitly ask about when participants began noticing, monitoring, or evaluating driving in relation to the dementia diagnosis

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Key Takeaways

Opportunities to improve communication, resource navigation, and overall support during and after transitions to stopping driving

Providing guidance on driving risks associated with dementia (what to watch for)

Assessing readiness to stop driving

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References

Barco, P. P., Baum, C. M., Ott, B. R., Ice, S., Johnson, A., Wallendorf, M., & Carr, D. B. (2015). Driving Errors in Persons with Dementia. Journal of the American Geriatrics Society, 63(7), 1373–1380. https://doi.org/10.1111/jgs.13508

Braun, V., & and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Brown, L. B., Ott, B. R., Papandonatos, G. D., Sui, Y. X., Ready, R. E., & Morris, J. C. (2005). Prediction of on-road driving performance in patients with early Alzheimer’s disease. JOURNAL OF THE AMERICAN GERIATRICS SOCIETY, 53(1), 94–98. 15th Annual Meeting of the American-Neuropsychiatric-Association. https://doi.org/10.1111/j.1532-5415.2005.53017.x

Camilleri, L., & Whitehead, D. (2023). Driving Assessment for Persons with Dementia: How and when? Aging and Disease, 14(3), 621–651. https://doi.org/10.14336/AD.2022.1126

Chee, J. N., Rapoport, M. J., Molnar, F., Herrmann, N., O’Neill, D., Marottoli, R., Mitchell, S., Tant, M., Dow, J., Ayotte, D., Lanctôt, K. L., McFadden, R., Taylor, J.-P., Donaghy, P. C., Olsen, K., Classen, S., Elzohairy, Y., & Carr, D. B. (2017). Update on the Risk of Motor Vehicle Collision or Driving Impairment with Dementia: A Collaborative International Systematic Review and Meta-Analysis. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 25(12), 1376–1390. https://doi.org/10.1016/j.jagp.2017.05.007

Chihuri, S., Mielenz, T. J., DiMaggio, C. J., Betz, M. E., DiGuiseppi, C., Jones, V. C., & Li, G. H. (2016). Driving Cessation and Health Outcomes in Older Adults. Journal of the American Geriatrics Society, 64(2), 332–341. https://doi.org/10.1111/jgs.13931

Hansmann, K. J., Gangnon, R., McAndrews, C., & Robert, S. A. (2024). Getting Rides From Others As a Coping Mechanism in the Transition to Non-Driving. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 79(6), gbae054. https://doi.org/10.1093/geronb/gbae054

Koumoutzis, A., Vivoda, J. M., & Cao, J. W. (2022). With a Little Help From My Friends and Family: Transportation and Caregiving Hours. Journal of Applied Gerontology, 41(8), 1914–1923. https://doi.org/10.1177/07334648221089624

Liddle, J., Bennett, S., Allen, S., Lie, D. C., Standen, B., & Pachana, N. A. (2013). The stages of driving cessation for people with dementia: Needs and challenges. INTERNATIONAL PSYCHOGERIATRICS, 25(12), 2033–2046. https://doi.org/10.1017/S1041610213001464

Ratnapradipa, K. L., Wang, J., Berg-Weger, M., & Schootman, A. M. (2020). Effects of Older Adult Driving Resumption on All-Cause Mortality. J Gerontol B Psychol Sci Soc Sci, 75(10), 2263–2267. https://doi.org/10.1093/geronb/gbz058

Timmermans, S., & Tavory, I. (2022). Data Analysis in Qualitative Research: Theorizing with Abductive Analysis (1st ed.). University of Chicago Press.

Toepper, M., & Falkenstein, M. (2019). Driving Fitness in Different Forms of Dementia: An Update. Journal of the American Geriatrics Society, 67(10), 2186–2192. https://doi.org/10.1111/jgs.16077

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Questions?

KJ Hansmann: kellia.hansmann@fammed.wisc.edu

https://www.fammed.wisc.edu/driving-decisions/

Guidance for discussing driving and dementia with patients and caregivers in FPM