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Correspondence: Address correspondence to John C. Morris, MD, Director, Alzheimer's Disease Research Center, Department of Neurology, Washington University School of Medicine, 4488 Forest Park Avenue, Suite 130, St. Louis, MO 63108. E-mail: morrisj{at}abraxas.wustl.edu
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Abstract |
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Key Words: Driving cessation • Alzheimer's disease • Attitudes and beliefs • Transportation safety • Older drivers
The prevalence of dementing disorders increases with advanced age. Dementia of the Alzheimer type, the clinically diagnosed syndrome of Alzheimer's disease (AD; American Psychiatric Association, 1994), is by far the most frequent dementing disorder in the United States (Barker et al., 2002) and is thus the focus of this study. Between 25% and 35% of older adults with AD are actively driving (Carr, Jackson, & Alguire, 1990; Foley et al., 2000; Gilley et al., 1991). A recent study estimated that approximately 4% of male drivers aged 75 and older were diagnosed with AD (Foley et al.). Given current demographic trends, we can anticipate an increasing number of older adults driving with dementing illnesses over the next few decades. Two issues that should be of interest to the public and health professionals regarding drivers with AD include public safety and driving retirement.
Data on AD drivers indicate that, as a group, when compared with controls, they may be at risk for motor vehicle crashes or impaired performance on road tests (Drachman & Swearer, 1993; Duchek et al., 2003; Fitten et al., 1995). Thus, formal assessment of drivers with early AD has been recommended in the medical literature, with some authors recommending performance-based road testing, and others recommending assessment of dementia severity (Dobbs, Carr, & Morris, 2002; Dubinsky et al., 2000). It is unknown how drivers, their families, practicing physicians, and other health professionals perceive these assessments and whether or not these individuals wish to participate in the assessment process or follow recommendations such as driving cessation or retesting.
The complex series of decisions that lead to driving cessation for individuals with AD are poorly understood (Freund & Szinovacz, 2002; O'Neill, 1997). Families, physicians, agencies, and law-enforcement officers generally take a more active role in initiating, implementing, and enforcing driving decisions for individuals with AD than they do for other older adults (Adler & Kuskowski, 2003; O'Neill et al., 1992; Persson, 1993). In spite of concerns for safety, however, persons with AD and their families seldom actively plan for driving cessation (Adler, Rottunda, Bauer, & Kuskowski, 2000). Years may elapse between the time family members recognize that the driver with AD should stop and actual termination of driving (Cotrell & Wild, 1999). This delay may be due to a number of factors. Drivers with AD often fail to appreciate the need for driving cessation, both because they lack insight into their illness and its consequences (Adler et al., 2000; Feher, Mahurin, Inbody, Crook, & Pirozzollo, 1991; Weinstein, Friedland, & Wagner, 1994; Wild & Cotrell, 2003; although awareness of deficits may vary—see Auchus, Goldstein, Green, & Green, 1994, and Verhey, Rozendaal, Ponds, & Jolles, 1993) and because their decisional capacity is impaired (Bédard, Molloy, & Lever, 1996; O'Neill, 1997). Families may lack insight into AD and its impact on driving as well (Adler, Rottunda, & Kuskowski, 1999; Cotrell & Wild; Rees, Bayer, & Phillips, 1995). Families also may fear an increase in caregiving burden following the termination of driving, and with good reason. After losing their license, the majority of persons with AD depend more heavily on family and friends for transportation, neither increasing walking trips to destinations nor increasing their use of public transportation, taxis, or van services (Taylor & Tripodes, 2001). Although they have the potential to play a vital role in decisions regarding driving cessation, physicians often do not recognize cognitive impairment among their patients who drive (Valcour, Masaki, & Blanchette, 2002) and often do not know how to report potentially dangerous drivers with AD (Cable, Reisner, Gerges, & Thirumavalavan, 2000).
Those who find themselves involved in decisions regarding driving and AD frequently experience the process as challenging and somewhat confusing (Wackerbarth & Johnson, 1999). It is unclear how the relevant stakeholders (i.e., the drivers, their families, practicing physicians, traffic and law-enforcement agents, and other professionals) perceive their respective roles and the roles of others in dealing with the rather large array of issues involved in these decisions. There is a dearth of published information on the attitudes and beliefs of various stakeholders regarding safety concerns and driving evaluation for drivers with AD. We also need more information on the barriers that delay driving retirement, and the strategies that lead to appropriate and successful driving cessation. We designed this study to begin to address some of these gaps in our understanding by asking a wide variety of key stakeholders to discuss their beliefs and perceptions of driving and AD. We elicited their views on the circumstances that either allow persons with AD to continue driving or prompt them to retire, and we compared stakeholders' beliefs regarding the identification and management of unsafe drivers with AD and the perceived barriers to and successful strategies for achieving driving cessation when appropriate.
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Methods |
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Participant Recruitment
Sixty-eight individuals from disparate backgrounds participated in the study. On the basis of their background, we assigned individuals to one of 10 focus groups: (a) advocates for older adults (i.e., members of various aging-related organizations; n = 10); (b) nonphysician health professionals (i.e., social workers, nurses, occupational therapists, and physician assistants; n = 8); (c) transportation and law-enforcement professionals (i.e., police officers, Department of Motor Vehicles [DMV] driving evaluators, attorneys, and American Automobile Association representatives; n = 8); (d) physicians specializing in AD and other dementing disorders (i.e., geriatricians and neurologists; n = 6); (e) urban-based primary care physicians (n = 5); (f) rural-based primary care clinicians (n = 3; 2 physicians and 1 advanced practice nurse); (g) current drivers with very mild to mild AD based on the Clinical Dementia Rating (CDR; Morris, 1993; n = 9); (h) former drivers with very mild to mild AD, who had ceased driving during the 12-month period prior to recruitment (n = 5); (i) family caregivers of current drivers with mild AD (n = 9); and (j) family caregivers of former drivers with mild AD (n = 5). We derived demographic characteristics for each group from responses to a self-administered questionnaire (subsequently described); these are presented in Appendix A.
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Focus-Group Process
We conducted ten 2-hr focus-group meetings in Spring–Summer 2002 at the ADRC. A doctoral-level social worker with experience in qualitative research (M. Berg-Weger) moderated all meetings and videotaped them for later transcription and content analysis. Following informed consent, participants in each group completed a brief demographic and driving-issues questionnaire. The moderator opened each session with personal introductions and then reviewed a handout on the cognitive–functional stages of AD as defined by the CDR to ensure a basic level of knowledge for subsequent discussion. Using the aforementioned focus-group questions to direct the discussion, the moderator elicited responses regarding participants' beliefs regarding driving and AD and issues surrounding driving cessation. We did not consider driving impairment that was related to factors other than AD (e.g., visual impairment).
Analysis
We used descriptive statistics to analyze the demographic and driving-issues questionnaire data (see Appendix A). Our analysis of the focus-group data used a grounded theory approach (Strauss & Corbin, 1998). The research team reviewed focus-group transcripts and developed a coding scheme (i.e., a hierarchy of descriptive or conceptual phrases summarizing concepts related to the research questions). Two members of the team (M. Perkinson and M. Berg-Weger) used this scheme to independently code each of the 10 focus-group transcripts. Several additional codes were generated during this process and incorporated into the coding scheme. These two team members compared their coding across transcripts and discussed the few instances of dissimilar coding. Approximately 10% of coding decisions required review and revision. All data that pertained to a given code (e.g., testing driving ability) were identified. We used ATLAS.ti Software (Muhr, 1997) to label and assemble all similarly coded segments of text for analysis. We compared and contrasted data for themes and patterns (Luborsky, 1994) across the different groups.
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Results |
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Focus Groups
We assembled tables to display the variety of responses for a given research question (Miles & Huberman, 1994). Key beliefs and strategies concerning AD and driving as expressed by members of each focus group are summarized in Tables 1–4. Because the advocates for older adults (Group 1) and nonphysician health professionals (Group 2) expressed similar beliefs toward driving and AD, we combined their responses in Table 1.
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Discussion |
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With few exceptions, participants across all groups expressed that a diagnosis of AD alone did not preclude driving and the decision to continue driving depended on the severity of the disease in each individual or their driving ability (Table 1). In contrast to the members of the other focus groups, transportation and law-enforcement specialists expressed concerns regarding driving at any stage of AD and believed that the safety of the public should take precedence over individuals' driving rights. This belief may stem from their experience with drivers with AD that tended to result from "incidents" or complaints. If this trend is validated in a larger sample, it might indicate a target for an intervention to educate transportation and law-enforcement officials on the nature of AD and the abilities of persons with very mild forms of this disease.
In addition to crash involvement, participants suggested a wide variety of physical and behavioral indicators to identify AD-related driving problems (Table 3). Members of all 10 focus groups advocated the use of road testing to identify unsafe drivers. Many stated that physicians should address the driving-safety issue during routine office visits and, when necessary, make referrals for performance-based road testing. The groups were unanimous that on-the-road testing should be incorporated into the driver's license-renewal process. However, attitudes regarding the timing, criteria to invoke testing, and operationalization of such a strategy varied considerably. There also was no consensus on how the costs of these assessments should be covered and by whom.
Although law-enforcement officers and DMV personnel were considered essential to the evaluation of driving competence, most focus-group participants also agreed that overall responsibility for identifying unsafe drivers and preventing future accidents was shared by the family, physicians, the drivers (to the extent they were able to recognize their situation), insurance companies, the Alzheimer's Association, and society in general. Most participants believed that family members have the primary responsibility for identifying and dealing with unsafe drivers, but they also recognized that the attitudes and behaviors of some family members may pose barriers to driving cessation (Table 2).
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Recommendations
The need for educational efforts on driving and AD that target relevant stakeholders was a prevailing theme for all focus-group participants. Workshops and seminars on AD may assist health professionals, families, transportation specialists, and law-enforcement officers in understanding AD progression, staging, and the consequences for driving. Family members should be educated about the warning signs or red flags of unsafe driving behaviors that were documented in our sessions. They should also be counseled and referred to educational materials such as The 36 Hour Day (Mace & Rabins, 1991) and the Alzheimer's, Dementia & Driving Web site of The Hartford, Inc. (http://www.thehartford.com/alzheimers).
Many focus-group participants reported observing unsafe driving behaviors in persons known to have or suspected of having AD. Because these qualitative data cannot reliably assess the prevalence of or risk for these occurrences, we suggest further studies with larger numbers of participants to document the frequency and type of unsafe driving behaviors instrumental in the final decision to stop driving. For now, the list (Table 3) generated by this project could be useful for families, clinicians, and transportation specialists in identifying areas of concern.
Termination of driving privileges also may have serious consequences for older adults (Foley et al., 2002) and violate individual autonomy (Morris, 1994). A recent study indicated that drivers with AD were taken to fewer driving destinations after driving retirement, even when there was a licensed driver available in the household (Taylor & Tripodes, 2001). More research is needed on the process of finding feasible alternative methods of transportation and maintaining older adults' connections with the community once driving is terminated. Similarly, the impact of driving cessation on psychological and physical health has not been well studied and also warrants further research.
Just as clinicians inquire about diet, exercise, or emotional well-being when treating patients, they should be aware that driving and transportation issues significantly impact access to sources of nutrition, opportunities to engage in physical activity, and opportunities for social engagement, which are critical to overall health in late life. Clinicians should receive education on the availability, cost, and insurance coverage of testing resources; information on their state laws and procedures for reporting unsafe drivers; a list of feasible alternative transportation for their patients in the community; and available support groups for older drivers and their caregivers.
Clinicians should provide support and practical suggestions for caregivers and others to assist the older driver with AD in ultimately terminating the driving role. An increase in depressive symptoms has been associated with driving cessation in older adults (Marottoli et al., 1997). Practitioners can serve as authority figures or mediators to implement the process of relinquishing the driving role; this may come in the form of reporting the impaired driver to the state agency that oversees drivers' licenses, holding a conference with the patient and family members to address the driving problem, or providing written recommendations to the patient and family.
We were impressed with the arrangement among some focus-group family members and older adult drivers to work together to monitor driving skills, including making a pact to terminate driving privileges when appropriate. In addition, some of the drivers in our focus groups retained insight into their impaired driving abilities. A guide to driving and AD developed by the Hartford Financial Services Group (2000) offers suggestions on ways to formalize and make explicit such informal pacts by developing driving contracts. This area of self-monitoring and contracts should be explored.
Medical organizations and educational institutions should train primary care physicians to assess and manage driving and impaired function in older adults. The publication of the American Medical Association's Physician's Guide to Assessing and Counseling Older Drivers (Wang, Kosinski, Schwartzberg, & Shanklin, 2003; http://www.ama-assn.org/ama/pub/category/10791.html) is a major step toward this goal. Our findings that caregivers desire input from their physicians is consistent with the role the Association has outlined for physicians to assist patients and families in determining the impact of disease on driving ability and to make appropriate driving-related decisions.
The Physician's Guide, however, does not fully address some issues specific to AD raised in our focus groups. These issues include the use of cessation pacts between the driver with AD and family members, the importance of family-member input into driving-related decisions, the description of unsafe driving behaviors specific to drivers with AD, the identification of barriers that delay or prevent driving cessation, and the definition of strategies for driving cessation. Systematic quantitative research is needed in these areas. The prevalence and relative importance of beliefs expressed by stakeholders in this study, for example, could be determined through surveys. Identification of optimal strategies for educating physicians and other health professionals in AD and driving assessment and reporting procedures is another important area for study.
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Footnotes |
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1 Alzheimer's Disease Research Center, Washington University School of Medicine, St. Louis, MO.
2 School of Social Work, Saint Louis University, St. Louis, MO.
3 Department of Psychology, Saint Louis University, St. Louis, MO.
4 Survey and Analysis Branch, DSCSD/CMHS/SAMHSA, Rockville, MD.
Decision Editor: Linda S. Noelker, PhD
Received for publication June 15, 2004. Accepted for publication February 16, 2005.
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This article has been cited by other articles:
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  T. M. Meuser, D. B. Carr, M. Berg-Weger, P. Niewoehner, and J. C. Morris Driving and dementia in older adults: implementation and evaluation of a continuing education project. Gerontologist, October 1, 2006; 46(5): 680 - 687. [Abstract] [Full Text] [PDF]
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 D. B. Carr, T. M. Meuser, and J. C. Morris Driving retirement: the role of the physician. Can. Med. Assoc. J., September 12, 2006; 175(6): 601 - 601. [Full Text] [PDF]
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| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
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| All GSA journals | Journals of Gerontology Series A: Biological Sciences and Medical Sciences | Journals of Gerontology Series B: Psychological Sciences and Social Sciences |
