Journal of Gerontological Nursing

Feature Article 

Self-Regulation of Driving Behaviors in Persons With Early-Stage Alzheimer's Disease

Rebecca Davis, PhD, RN; Megan Owens, BSN, RN, CHPN

Abstract

The purpose of the current study was to determine if persons with Alzheimer's disease (AD) or mild cognitive impairment (MCI) due to AD reported awareness of driving ability and made self-regulatory changes to the same degree as older adults without AD. Driving awareness and behaviors were collected using a self-report survey. Results of the AD/MCI group were compared to a similarly aged control group. Results showed that persons with AD/MCI reported less confidence in their driving ability and worried about getting lost more often than the control group. In addition, they were more likely to have stopped driving. The AD/MCI group reported that they avoided driving in unfamiliar situations, drove less often, and drove with another person significantly more than the control group. The results give evidence that persons within the early stage of AD may have self-awareness of their driving ability and self-regulate their driving to enhance safety. [Journal of Gerontological Nursing, 47(1), 21–27.]

Abstract

The purpose of the current study was to determine if persons with Alzheimer's disease (AD) or mild cognitive impairment (MCI) due to AD reported awareness of driving ability and made self-regulatory changes to the same degree as older adults without AD. Driving awareness and behaviors were collected using a self-report survey. Results of the AD/MCI group were compared to a similarly aged control group. Results showed that persons with AD/MCI reported less confidence in their driving ability and worried about getting lost more often than the control group. In addition, they were more likely to have stopped driving. The AD/MCI group reported that they avoided driving in unfamiliar situations, drove less often, and drove with another person significantly more than the control group. The results give evidence that persons within the early stage of AD may have self-awareness of their driving ability and self-regulate their driving to enhance safety. [Journal of Gerontological Nursing, 47(1), 21–27.]

People around the world are living longer. In fact, the population of adults aged ≥60 years has doubled since 1989 (United Nations Department of Economic and Social Affairs, 2017). With the larger older adult population, there has been a growing population of older drivers. In 2018, 83% of persons aged >70 years had a driver's license (National Highway Traffic Safety Administration [NHTSA], 2019). For most older adults, driving is safe. In fact, persons aged >65 years have less accidents than their younger counterparts (NHTSA, 2019). However, motor vehicle accidents are more likely to cause death in adults aged >65 years than in younger adults (NHTSA, 2019). In fact, motor vehicle injuries are the second leading cause of unintentional death in persons aged ≥65 years (Bergen et al., 2017).

Of particular concern is the population of drivers who have cognitive disease, such as Alzheimer's disease (AD). AD is the most common cause of dementia, affecting 5 million persons in the United States (Alzheimer's Association, 2020a). The continuum of AD begins years before symptoms are reported due to subtle brain changes that occur during the preclinical phase. Once individuals develop detectable cognitive deficits, but still maintain independent functioning, they are said to have mild cognitive impairment (MCI) due to AD. The final phase of AD is dementia, which is exhibited by progressive cognitive and functional decline that impacts independent functioning, and eventually results in death (Alzheimer's Association, 2020b).

Driving involves cognitive and functional abilities that are affected by age-related changes and cognitive diseases, such as AD (Eby et al., 2012). Cognitive functions necessary for driving, such as attention and spatial orientation, are especially impaired with AD or MCI, making this population especially vulnerable to unintentional motor vehicle injury and death (Vlcek & Laczó, 2014; Wijesinghe et al., 2017). Of the 5.7 million people aged ≥65 years diagnosed with AD, all will eventually lose the ability to drive if they do not die from other illnesses (Alzheimer's Association, 2020b).

Despite these challenges, persons with MCI or early-stage AD often continue driving for a time after diagnosis (Apolinario et al., 2009). Deciding when to stop driving is one of the most difficult decisions families and persons with AD have to make (Ackerman et al., 2011; Adler, 2010). It is well established that driving cessation can cause profound negative health outcomes, such as increased risk for depression, physical deconditioning, institutionalization, and mortality. Although careful monitoring is needed to ensure continued safety on the road, it is not always necessary to stop driving immediately after an AD diagnosis because people with AD can drive safely for a time (Alzheimer's Association, 2020b; Davis & Ohman, 2017). Due to the varied rate of progression for AD, there is no standardized timeline for driving cessation within this population.

An alternative to driving cessation is self-regulation of driving. Self-regulation of driving involves modifying driving behaviors to avoid complex driving situations and difficult road conditions (Bergen et al., 2017). Common modifications include restricting the distance driven, driving only during the daylight, avoiding roadways with high traffic volume, and driving only in mild weather (Eby et al., 2012; Festa et al., 2013). Older adults who have insight into existing functional and cognitive impairments have been shown to make driving behavior modifications such as those to increase safety and reduce risks (Bergen et al., 2017). Increasing age, being female, having health problems, and presence of visual disorders have been shown to be related to self-regulation of driving in older adults (Bergen et al., 2017).

Rudman et al. (2006) developed a model of the process of self-regulation of driving with aging based on results of a phenomenological study. They proposed that many factors can be related to self-monitoring of driving behavior, such as feedback from family or providers; self-perceived changes in physical, visual, and cognitive abilities; and environmental factors related to driving, such as hazards, beliefs, and the ability to access alternative transportation. They related self-monitoring to self-regulation of driving behaviors, which in turn affects driving behaviors. Driving behaviors are proposed to affect the level of comfort of the driver. Ultimately, they proposed that older adults who become uncomfortable driving decide to cease driving.

Little is known about the ability of persons with early-stage AD to self-monitor their ability to drive safely. A common problem seen in AD is anosognosia, which is unawareness of limitations in abilities or function (Mondragón et al., 2019). Thus, it can be expected that those with AD will eventually lose self-awareness of their limitations in function, which can lead to poor decision making about high-risk activities, such as driving. However, the literature about anosognosia in early-stage AD is limited (Mondragón et al., 2019). In the early stage of the disease, cognitive abilities, such as memory, spatial knowledge, and planning, are beginning to be impaired (Alzheimer's Association, 2020c). Rudman et al.'s (2006) model demonstrates a potential linkage between cognitive abilities and self-monitoring of behavior. If individuals with AD are able to self-regulate their driving behaviors early in the disease, they are more likely to be able to drive safely for a time. In addition, self-regulation of driving can be encouraged and promoted by health care providers and families in persons with AD. Thus, the purpose of the current study was to describe and compare self-awareness of driving ability and the self-regulating behaviors of older adults with and without AD.

Method

Participants

Participants from the current study were part of a larger published study on wayfinding in aging and AD (Davis et al., 2017). Briefly, individuals were recruited from memory clinics, senior living centers, religious institutions, and one Alzheimer's Disease Research Center. Individuals aged ≥62 years were diagnosed with early-stage AD or MCI due to AD by established criteria (Albert et al., 2011; McKhann et al., 1984) for the AD/MCI group; or no diagnosis of cognitive disease for the control group. Individuals with AD had to score 0.5 to 1 on the Clinical Dementia Rating Scale, demonstrating scoring in the early stage of the disease (Hughes et al., 1982). Individuals without AD/MCI had to score ≥27 on the Mini-Mental State Examination (MMSE), indicating low risk for dementia (Folstein et al., 1975).

Procedures and Measures

A descriptive, correlational design was conducted for the current study. After approval from the University Institutional Review Board, research staff explained the study to those interested. Informed consent was obtained from participants with consent capacity; those without consent capacity gave assent and informed consent was obtained by a legally authorized representative. The Montreal Cognitive Assessment (MoCA) was used to assess cognitive ability in all participants. The MoCA is a 30-item, brief screening tool that measures cognitive changes in MCI and AD (Nasreddine et al., 2005). The MoCA has been established as a sensitive and specific tool for the detection of MCI and AD and is sensitive to global cognitive changes in early to moderate stage dementia (Freitas et al., 2013).

In addition, participants were given a demographic questionnaire devised by the researchers, which asked questions about living status, education, gender, and health. They were also given a 7-item, investigator-developed driving survey that contained questions about their self-perceived driving habits and abilities. These questions were developed based on a literature review about driving and aging (Devlin & McGillivray, 2014; Owsley et al., 1999; Rudman et al., 2006). The authors developed their own tool because of a lack of tools that examined driving behaviors and self-awareness of driving ability. The reviewed studies and literature reviews found that driving self-regulation is most frequently exhibited by avoiding higher risk driving situations (e.g., driving alone) and decreasing the time spent driving or stopping driving altogether. For the current study, questions related to avoidance of driving situations were included, such as whether individuals ever drove alone and whether they avoided unfamiliar driving. In addition, there was a question about time spent driving. Questions related to self-awareness of driving ability asked participants how they would rate themselves as a driver; if they were ever confused or nervous while driving; and whether they ever get lost or worry about getting lost while driving (Figure 1).

Driving self-regulation questionnaire.

Figure 1.

Driving self-regulation questionnaire.

Data Analysis

Descriptive statistics were used to portray sample characteristics, and differences between groups were analyzed using t tests and chi-square analysis as appropriate. Driving habits were compared between groups using chi-square analysis. In addition, the total number of self-regulating behaviors was summed. Self-regulating behaviors included: driving cessation (indicated by selecting that they were not still driving), driving less than daily, avoiding driving alone, and avoiding driving in unfamiliar places. Persons who indicated they were no longer driving were given a score of 4 (the highest score, indicating the highest level of self-regulation); those who were driving and had no self-regulating behaviors received a score of 0. The three questions related to self-awareness were individually, qualitatively analyzed. Gender differences on driving self-regulation and self-awareness were also calculated for the group as a whole.

Results

A total of 98 individuals (41 males, 57 females) participated in the study. The mean age for the whole group was 76 years. The groups were similar with respect to gender, race, and education. They differed with respect to living situations (more persons with AD lived with someone else) and cognition (Table 1).

Participant Demographics

Table 1:

Participant Demographics

Self-Regulation of Driving Behaviors

In the whole group, 81 (83%) participants were still driving. Of those driving, the most common self-regulatory behaviors were to limit driving frequency to less than daily (n = 29, 36%), followed by avoiding unfamiliar driving (n = 15, 19%). Few drivers in the group reported never driving alone (n = 5, 6%). The number of self-regulatory driving changes made by the whole group ranged from 0 to 4, with a mean of 1.19 (SD = 1.49).

There was a significant difference between the AD/MCI and control groups with regard to self-regulation of driving behaviors (Figure 2). Persons in the AD/MCI group were more likely to have stopped driving (n = 12, 27%) compared to the control group (n = 5, 9%) (χ2[1, n = 91] = 5.04, p = 0.033). Drivers in the AD/MCI group were more likely to limit the frequency of driving (χ2[1, n = 81] = 3.897, p < 0.048), avoid driving unfamiliar routes (χ2[1, n = 81] = 16.083, p < 0.001), and avoid driving alone (AD/MCI group: n = 5, 15%). No participants in the control group reported that they avoided driving alone (Fisher's exact test, p = 0.009). The AD/MCI group also reported making more driving modifications overall (mean = 1.82, SD = 1.57) compared to the control group (mean = 0.67, SD = 1.19; t[98] = −4.10, p < 0.001).

Comparison of self-regulating driving behaviors between groups.Note. AD = Alzheimer's disease; MCI = mild cognitive impairment. Chi-square or Fisher's exact test used; * p < 0.05; ** p < 0.01.

Figure 2.

Comparison of self-regulating driving behaviors between groups.

Note. AD = Alzheimer's disease; MCI = mild cognitive impairment. Chi-square or Fisher's exact test used; * p < 0.05; ** p < 0.01.

Self-Awareness of Driving Performance

In regard to self-awareness of driving performance, there were significant differences between groups (Figure 3). Of the AD/MCI group, 27% (n = 9) reported having recently gotten lost or been worried about getting lost while driving compared to only 6% (n = 3) of the control group (χ2[1, n = 81] = 6.848, p = 0.009). In addition, in the AD/MCI group, fewer individuals rated themselves as good to excellent drivers (n = 25, 76%) compared to the control group (n = 44, 92%) (χ2[1, n = 81] = 3.92, p = 0.048). There were no statistically significant differences found between groups in regard to feeling confused, nervous, or uncomfortable while driving (χ2[1, n = 81] = 2.83, p = 0.093).

Comparison of self-awareness of driving ability between groups.Note. AD = Alzheimer's disease; MCI = mild cognitive impairment. Chi-square or Fisher's exact test used; * p < 0.05.

Figure 3.

Comparison of self-awareness of driving ability between groups.

Note. AD = Alzheimer's disease; MCI = mild cognitive impairment. Chi-square or Fisher's exact test used; * p < 0.05.

Effect of Gender

There was a trend for females to admit to avoiding unfamiliar driving situations (χ2 = 3.65 [1], p = 0.056). There were no statistical differences in self-awareness of driving ability or self-regulation of driving behaviors between males and females. In addition, females made similar numbers of driving modifications (mean = 1.33, SD = 1.48) as males (mean = 1, SD = 1.49; t = −1.09 [96], p = 0.277).

Discussion

The most interesting finding from the current study was that persons with early-stage AD/MCI reported more self-regulatory driving modifications than similarly aged adults without AD. In addition, persons with AD/MCI reported that they were worried about getting lost more often than the control group, and they rated themselves as good or excellent drivers less often. Thus, they may have self-awareness of their driving limitations. This finding may indicate that insight into functional and cognitive impairments is still present in the early stages of AD (Ackerman et al., 2011). Several studies have found that older adults restrict their driving as they age (Bergen et al., 2017). The current study findings indicate that persons with AD/MCI restrict their driving behaviors significantly more than those without cognitive impairment. This finding is important because the ability to compensate for reduced cognitive function may be effective in maintaining safety on the road (Choi & Feng, 2018).

The results of the current study are congruent with other studies that examined cognitive decline and driving modifications. Devlin and McGillivray (2014) conducted a systematic review of 11 studies of driving self-regulation in persons with cognitive impairment. Several studies found that persons with cognitive impairment self-regulated their driving behaviors, especially by restricting their driving. Similarly, we found that those with AD/MCI were more likely to stop driving and modify their driving behaviors. Of importance, our sample comprised individuals with MCI due to AD or early-stage AD and is specific for this population.

A major concern of many who provide care for persons with AD is whether the person with AD has the self-awareness of their abilities to make safe decisions. Our study showed that persons with AD/MCI rated themselves as good to excellent drivers less often than the control group and admitted to getting lost more often. Thus, these participants appeared to have some self-reflection about their abilities. However, our study did not test participants' actual driving ability; thus, it is not possible to compare the self-analysis of ability with their actual driving ability. Some researchers have questioned whether driving cessation and modification occurs due to external pressure on drivers with AD rather than self-initiated changes (Devlin & McGillivray, 2014). It is possible that persons with early-stage AD/MCI have concerns about their driving but are better or worse drivers than they perceive themselves to be.

Although it is reassuring that our study results showed that persons with AD/MCI modified their driving behaviors, it is still important to note that most participants (73% of the AD/MCI group) were still driving. In one integrative review of driving in early-stage AD, Davis and Ohman (2016) found that although some persons with early-stage AD can safely continue to drive, there is insufficient evidence for how best to determine when persons with AD should stop driving. Our study results indicate that finding methods for improving safe driving practices in persons with AD/MCI is imperative, as many continue to drive while cognitively impaired.

Rudman et al.'s (2016) model of self-regulation of driving behavior lends some insight into our findings. Persons with AD/MCI may rely on their own self-awareness of driving behaviors and make necessary modifications, especially early in the disease. They may rate themselves as good drivers, however, and continue driving. In this case, the impact of interpersonal factors, such as consultation with a health care provider and intervening by family members, must play a part in helping individuals make appropriate choices. Unfortunately, studies have shown that health care providers most often are reluctant to discuss driving with persons with dementia, and even fewer refer patients for formal assessment of their driving ability (Adler, 2010; Liddle et al., 2013). It is essential that nurses and other health care providers regularly discuss driving safety, identify those at risk for driving problems, and refer those who have any indication of driving problems for assessment and support (Davis & Ohman, 2017). Including the opinion of close family members and other informal caregivers can assist with identifying those at risk, especially for persons with AD/MCI who have lost self-awareness of their limitations (Croston et al., 2009).

Strengths and Limitations

A strength of the current study is that it included persons with diagnosed AD or MCI due to AD. However, the small sample size limits the generalizability of the findings. In addition, the survey was self-reported by persons with memory impairment; and the tool we used was newly developed. The results showed an expected pattern, with those with AD/MCI showing a tendency for more self-regulatory driving behaviors than those in the control group. Further studies should examine the complex process of driving with AD/MCI over time and involve testing of driving ability. In addition, the contribution of family and health care provider influence on driving modifications should be examined. Finally, we were struck by the number of persons who did not rate themselves as good drivers but continued to drive. Further investigation into this phenomenon is important, as people may be driving when they are not comfortable doing so due to the difficulties associated with driving cessation.

Implications

The study findings have implications for practice. Health care providers should be aware that persons with AD/MCI often continue to drive after their diagnosis. They may make modifications to their driving habits but feel less confident about their driving. Health care providers should assess the driving ability of person's with AD/MCI and ask caregivers for their insights and concerns (Davis & Ohman, 2017).

Conclusion

The results from this survey suggest that adults with early-stage AD or MCI have some self-awareness of limitations in their driving ability. Furthermore, they often self-regulate their driving behaviors, which is likely to enhance safety and comfort. Persons with AD/MCI tend to stop driving more often than those without AD/MCI, limit their driving frequency, drive alone less often, and limit driving in unfamiliar situations. In addition, they rate themselves as good or excellent drivers less often and get lost more often than those without AD/MCI; yet most continue to drive.

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Participant Demographics

CharacteristicControl (n = 53)AD/MCI (n = 45)χ2 (df = 1)
n (%)
Lives alone19 (36)3 (7)11.91**
Race2.63
  Caucasian50 (94)45 (100)
  African American3 (6)0 (0)
Gender0.80
  Female33 (62)24 (53)
  Male20 (38)21 (47)
Employment status7.40**
  Not employed45 (85)45 (100)
  Employed8 (15)0 (0)
Mean (SD) (Range)t (df)
Age (years)75.42 (5.36) (62 to 86)77.29 (6.67) (63 to 92)1.52 (96)
Educational level (years)15.82 (2.89) (9 to 22)15.18 (3.07) (8 to 24)1.04 (96)
MMSEa29.14 (1.0) (27 to 30)25.16 (3.73) (13 to 30)6.05 (50)**
MoCAb25.6 (2.09) (20 to 30)18.61 (3.68) (12 to 26)10.54 (61)**
Authors

Dr. Davis is Professor and Associate Dean for Research and Scholarship, and Ms. Owens is Doctor of Nursing Practice Student, Kirkhof College of Nursing, Grand Valley State University, Grand Rapids, Michigan.

The authors have disclosed no potential conflicts of interest, financial or otherwise. Funding was provided by the National Institute on Aging.

Address correspondence to Rebecca Davis, PhD, RN, Professor and Associate Dean for Research and Scholarship, Kirkhof College of Nursing, Grand Valley State University, 301 Michigan Street, 422 Center for Health Sciences, Grand Rapids, MI 49024; email: davirebe@gvsu.edu.

Received: May 19, 2020
Accepted: August 19, 2020

10.3928/00989134-20201209-01

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