The Scope of the Issue

The Consequences of Driving Cessation: Different Impacts for the Individual with Dementia and the Caregiver

Impact of Cessation for the Individual With Dementia

Two major consequences of driving cessation that affect the individual are reported in the literature. There is a loss of the sense of independence and autonomy that is often associated with driving, while reduction in mobility may result in social isolation.

Feelings of autonomy and independence are often associated with driving, so that driving cessation often prompts depressive symptoms and a decrease in activity level (Marottoli, 1998). Having a spouse or relative who drives does not mitigate the emotional impact (Stearns, Sussman, and Skinner, 2004). Therefore, it appears that it is actual loss of the ability to drive that is associated with depressive symptoms, not just the social isolation that can come from a reduction in mobility. Moreover, individuals with dementia may lack the skills to cope with feelings of diminished self-worth and increasing dependency. A recommendation from a doctor to stop driving may be met with resistance or denial, partly because of patients’ inability to recognize the danger posed by continuing to drive and also because they may have lost the capacity to manage their emotional responses (Hunt, 2003). Not surprisingly, then, drivers with dementia may continue driving after they have been advised to stop or even after they have had a crash (Talbot et al., 2005). Patients with Alzheimer’s disease have reported that driving cessation is one of the most sensitive and difficult issues to discuss (Post, Whitehouse, and Fairhill, 1995). Because strong emotion so often surrounds the issue of driver cessation, the decision to stop driving is often unplanned and sudden (Adler and Kuskowski, 2003).

For individuals with Alzheimer’s disease, losing the ability to drive has varying effects on their ability to remain active in the community and to continue engaging in routine activities of daily living, such as shopping and going to medical appointments. In one study (Adler et al., 1999), 68 percent of Alzheimer’s patients and caregivers believed that driving cessation would inconvenience the individual with Alzheimer’s; however, just half of the caregivers believed it would inconvenience the family. These patients were less likely to be depended on to provide transportation for others and were mostly supported by caregivers who provided for their mobility needs. However, a 2004 AARP survey of the general aging population (Bailey, 2004) found that on any given day, 50 percent of nondrivers 65 and older stay at home because they lack transportation options. This can result in increased isolation from the community and can seriously impair the individual’s ability to age in place (U.S. Department of Transportation, 2003). Driving cessation restricts access to economic, social, and health care activities and services (Stearns, Sussman, and Skinner, 2004). Nondrivers on average make 15 percent fewer trips to the doctor and 65 percent fewer social trips than drivers do (Millar, 2005). There are often additional burdens of mobility loss, such as the increased cost of goods and services that must be delivered and the need either to find substitutes for inaccessible goods or go without them (U.S. Department of Transportation, 2004). Additional research is needed to get a better understanding of the impact of driving cessation on the social lives of people with Alzheimer’s.

Impact of Driving Cessation on the Family

Driving cessation can affect the Alzheimer’s caregiver in many ways. They may need to provide transportation for the individual personally or arrange for transportation services, and the nondriving family member may also experience the loss of personal mobility if they were dependent upon the individual with dementia to drive.

With the cessation of driving, responsibility for community mobility of the individual with Alzheimer’s typically falls on family members. In one caregiver survey (Alzheimer's Association, 2005), 82 percent reported that they helped provide or arrange transportation for the affected family member. When individuals with dementia do stop driving, the majority of them depend on family members for transportation, with a very small percentage using public transportation such as Medivan or other paratransit services (Adler et al., 2000; Adler and Kuskowski, 2003).

Help with transportation is one of the most common instrumental activities of daily living (IADLs) assumed by Alzheimer’s caregivers (Alzheimer’s Association, 2005). Twenty-four percent of Alzheimer’s caregivers reported using an outside service to provide transportation for the care recipient, and 18 percent used a home-delivery service such as Meals on Wheels to provide meals. The Metlife Foundation found that nearly three-quarters of all caregivers who aided in transportation, shopping, cooking, and management of finances were spending about 22 hours per month to provide this help (National Alliance for Caregiving, 2004). Among caregivers who help arrange such services, 79 percent say that they need help in finding time for themselves, managing their stress, and balancing work and family responsibilities (National Alliance for Caregiving, 2004). It should be noted that transportation for such amenities as visiting others or going to the hairdresser were not included in the trips discussed, even though these have a positive impact on quality of life.

Caregivers are likely to be among the cohort of older women who depend upon spouses for their own transportation (Adler, Rottunda, Rasmussen, and Kuskowski, 2000). Future cohorts of women may be more likely to drive themselves. A study by Adler et al. (2000) found that transportation-dependent caregivers were less likely than nondependent caregivers to have a valid driver’s license. Moreover, even among those with licenses, some did not drive, and all reported driving significantly less than the individual with dementia. The most common reasons given for not driving included a lack of a driver’s license and medical impairments of their own.