Occupational Therapy In Health Care, 28(2):132–139, 2014  C 2014 by Informa Healthcare USA, Inc. Available online at http://informahealthcare.com/othc DOI: 10.3109/07380577.2014.903583

ARTICLE

Consensus Statements on Driving for Persons with Dementia Carol J. Wheatley1 , David B. Carr2 , & Richard A. Marottoli3 1

Department of Outpatient Rehabilitation, MedStar Good Samaritan Hospital, 5601 Loch Raven Blvd, Baltimore, Maryland, USA, 2 Division of Geriatrics and Nutritional Science, Washington University at St. Louis, The Rehabilitation Institute of St. Louis (TRISL), Parc Provence, 4488 Forest Park, St. Louis, Missouri, USA, 3 Yale University School of Medicine, VA Connecticut Healthcare System, PO Box 208025, 333 Cedar Street, New Haven, Connecticut, USA

ABSTRACT. The presence of dementia can have a profound effect on a person’s capacity for driving, and will lead to eventual cessation of driving and reliance on alternative transportation options. This paper offers evidence and discussion that affirm eight consensus statements related to drivers with dementia and the impact of dementia on the driving task. These statements offer guidance for occupational therapy practitioners when addressing driving and community mobility, a valued instrumental task of daily living. KEYWORDS.

Dementia, driving, instrumental activities of daily living

INTRODUCTION Transportation makes social and community participation possible. For a person who has always relied on his or her personal vehicle as their primary means of transportation, the loss of the ability to drive can have a profound effect on social contacts, engagement in community activities, ability to access services such as health care, and can also result in depression (Marottoli et al., 1997). Many older adults with a dementing illness may lack insight into their deficits and may also have lost the capacity to safely drive (Carr et al., 2010). Thus, the question of fitness to drive needs to be addressed by health care providers in the early stages of this progressive neurodegenerative disease. This paper reviews the literature underlying eight consensus statements associated with dementia and driving, which were affirmed at an expert panel meeting of the Gaps and Pathways Project (see Dickerson and Schold Davis, this issue). Address correspondence to Carol J. Wheatley, MS, OTR/L, CDRS, Driver Rehabilitation Specialist, Outpatient Rehabilitation Department, MedStar Good Samaritan Hospital, 5601 Loch Raven Blvd, Baltimore, MD 21239, USA. (E-mail: [email protected]). (Received 25 February 2014; accepted 09 March 2014)

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Dementia Diagnosis Formal criteria to diagnose mild cognitive impairment (MCI), dementia, and specifically Alzheimer’s disease (AD) have been updated (Albert et al., 2011; McKhann et al., 2011). Dementia is typically defined as the new onset of impairment in at least two cognitive domains (e.g., memory, attention, language, object identification, motor function, and abstract thinking), which have contributed to the presence of new onset functional impairment (McKhann et al., 2011). There is an estimated prevalence of 5.2 million individuals with AD (Gaugler et al., 2013) in the United States. AD is the most prevalent type of dementia, accounting for an estimated 60–80% of all dementia cases. MCI is a syndrome defined by one or more abnormalities in a specific cognitive domain (e.g., memory and language). Abnormal functioning is defined as a 1.5 or greater deviation from the norm on a standardized psychometric test of the specific domain, and usually there is an absence of significant impact on daily function (Albert et al., 2011). Although the prognosis is variable, it is believed that every person with AD will advance through an MCI stage (Albert et al., 2011). In the typical progression of dementia, the person’s ability to perform complex tasks is initially affected and, as the disease advances, the person loses the capacity to perform more elemental tasks. Thus, problems with driving may be seen early in the course of dementia. In fact, two early studies indicate there can be impairment in driving skills with the MCI phenotype (Frittelli et al., 2009; Wadley et al., 2009). Many studies found increases in crash rate for drivers with dementia compared to age-matched controls (Carr & Ott, 2010; Rizzo et al., 2001) and there is consensus among many professional societies that persons with moderate to severe dementia should not drive (Brown & Ott, 2004; Carr & Ott, 2010). The deficits of a person with moderate to severe dementia are believed to be of such magnitude that they could no longer safely or practically operate a motor vehicle (Berndt et al., 2008; Carr et al., 2005; Foley, 2000). Pooled data from two longitudinal studies involving 134 drivers with dementia (Duchek et al., 2003; Ott et al., 2008) reveal that 88% of drivers with very mild dementia and 69% of drivers with mild dementia were still able to pass a formal road test. Thus, some but not all drivers may be able to maintain driving abilities in the early stages of the disease. Recent evidenced-based reviews provide clinicians with recommendations and algorithms to assess fitness to drive in dementia by extensively reviewing the driving literature in this area (Carr & Ott, 2010; Iverson et al., 2010). Although there are limitations to the use of psychometric testing in assessing dementia severity, specific scores on global psychometric cognitive screens or specific tests may give useful ranges that could place drivers in “at-risk” categories. Examples of global tests include: Mini-Mental State Examination (Folstein et al., 1975), Short Blessed Test (Katzman et al., 1983), Montreal Cognitive Assessment (Nasreddine, 2005), and St Louis University Mental Status Examination (Tariq et al., 2006). However, these global measures are not strongly associated with the risk of involvement in motor vehicle crashes and consensus has not been reached for cut-off scores to define crash risk (Iverson et al, 2010; Molnar et al., 2006). Thus, most researchers would agree that a brief mental status screen should not be the sole determinant of driving recommendations (Iverson et al., 2010). However, the

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scores of any mental status screen can provide a rough estimate of dementia severity and possibly at-risk driving (e.g., need for further assessment) given known limitations for such factors as race, education, and sensory deprivation. Cognitive domains such as attention, executive function, visuospatial ability, and information processing speed are essential to the driving task. A meta-analysis of neuropsychological tests of driving performance in patients with dementia concluded that tests of visuospatial skills are the best predictors of driving impairment (Reger et al., 2004). Impaired performance on visuomotor and executive function tests such as the Trail Making Test along with maze completion (Whelihan et al., 2005, Ott et al., 2008, Carr & Ott, 2010) have been associated with driving impairment in older adults with dementia. However, all of these studies suffer from referral bias, small samples, and the need for replication at other sites. Nonetheless, the application of these tests to patients that have a moderate probability of failing a road test (e.g., 30–70% range) is a promising strategy to develop models that are reliable and can be justified to clinicians, patients and their caregivers. Many researchers will also use a variety of outcomes to determine safety in drivers with dementia such as motor vehicle crashes, performance-based road tests, and driving simulation. Cognitive capabilities must also be put in the context of other health issues that may affect daily function and driving safety. Thus, an individual who has conditions that affect their vision or physical abilities in addition to cognition may be at additional risk. The effect of psychoactive medications used to treat these or other conditions may also contribute to driving risk (Hetland & Carr, in press). These various factors should serve to raise the level of concern and help to guide a decision to refer for a more specialized driving evaluation. Based on the evidence described above and other evidence on assessment of persons with dementia (see Dickerson, this issue), the importance of mobility to the health of older adults, and discussion at the expert meeting, three of the eight consensus statements were affirmed at the highest level (e.g., Level 1: Evidence is strong and allows for an evidence based consensus statement).

• An individual with moderate to severe dementia should not drive. • Those individuals with very mild or mild dementia may be appropriately referred for further testing when risk factors for unsafe driving are present. • For an individual with a neurodegenerative dementia, mobility counseling (to include alternative methods of transportation) should start immediately anticipating that driving cessation will likely occur in the future. Interventions Health care providers need to be vigilant to screen for MCI with their older clients as one in seven older adults over the age of 70 have some cognitive deficits (Plassman et al., 2007). Evidence of a recent at-fault crash, new onset of impaired driving behaviors noted by caregivers, functional impairment in other tasks that require executive function (e.g., cooking and finances), or impaired measurements on psychometric tests (e.g., attention and visual search) may be used as evidence to identify potential risk and to encourage further assessment of driving fitness by the primary care physician or other health care providers.

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Dementia is of particular concern not only due to the effect of cognitive decline on driving safety, but also because persons with dementia often lack or have limited insight into their deficits. Consequently, they do not develop or consistently utilize strategies to increase their driving safety. At early stages of dementia, issues such as trip planning/scheduling or navigation may be affected. However, studies have found that there are specific impairment in lane-changing skills (Dawson et al., 2009), merging, left turns, signaling to park (Grace et al., 2005), and route following ability (Uc et al., 2004). Passengers, such as family members, caregivers, or friends, may begin to attempt to support the person’s driving by providing brief, simple navigational assistance (e.g., reading a map or noting an upcoming turn). Destination finding or navigation is often a collaborative or shared experience among older adult couples, which may allow the older driver to focus on safety (Vrkljan & Polgar, 2007). As the severity of dementia increases, driving performance and safety may be more directly impaired, and the passenger may begin copiloting. Copiloting is defined in the context of dementia where (a) a passenger provides specific and continuous verbal guidance to the driver in tactical traffic decisions (e.g., noting potential driving hazards) and/or (b) provides instructions on when to do specific operational maneuvers (e.g., braking for stop signs or potential hazards). The act of copiloting may add to, rather than reduce, the level of driving risk. In many traffic situations, there will be insufficient time for a copilot to detect a hazard and alert the driver, and for a driver with dementia to respond quickly to avoid a crash. Consequently, the act of co-piloting is not recommended (Carr et al., 2010; Adler & Silverstein, 2008). The person with dementia is also at risk for becoming lost when driving alone (Silverstein et al., 2002). This level of impairment and the need for assistance indicates that the individual needs to cease active driving and to rely on others for transportation. Based on this evidence, one consensus statement was affirmed, determined to be at Level 2 (the evidence is suggestive):

• For individuals with dementia, self-report regarding driving capability may be inaccurate; therefore, observation of occupational performance (e.g., instrumental activities of daily living (IADL) performance or in vehicle) is recommended. Another statement, based on clinical judgment achieved consensus relating to copiloting and navigation was affirmed:

• Copiloting, in which a passenger is assisting the driver with tactical maneuvers (e.g., prompts for scanning and obeying rules of the road) or operational aspects of driving (e.g., prompts for braking, turn signaling, and steering), lacks sufficient evidence to recommend it as a strategy to improve fitness to drive. This type of copiloting is an indication that the patient should stop active driving, as verbal instructions are insufficient in a driving situation where a rapid response is required to prevent a crash. Navigational assistance (e.g., verbal prompts about upcoming turns, assistance with directions) may be helpful to all drivers and is not an indication of being unfit to drive.

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Since occupational therapy practitioners use functional performance as a basic component of their evaluative process (AOTA, 2014), therapists have a unique opportunity to observe their clients cooking a meal, writing a check, making a phone call, or finding their driver’s license in their wallet revealing deficits in coordination, visuospatial skills, and cognitive/executive function that may not have been previously noted. Thus, an occupational therapist may be in the position to identify previously undiagnosed cognitive impairment and also importantly, the assessment of activities of daily living (ADL) function can provide valuable information to help the physician in tracking the impact and progression of the disease if already diagnosed. Considering impaired performance in basic or instrumental ADLs, the therapist must consider the effect of these deficits on personal and community mobility, which for many people is independent driving. Therapists need to consider making recommendations to the client, family, and/or physician regarding the need for a comprehensive driving assessment (Dickerson et al., 2011; Barco et al., 2012). Additionally, occupational therapy practitioners should know their state reporting laws in regards to dementia, additional medical conditions, and their ethical and/or legal duty or requirements to report their concerns to the physician and/or the state licensing agency (see Slater paper this issue). When cognitive impairment is diagnosed such as at the MCI stage, recommendations to enhance safe driving may be provided, such as limiting geographical range, avoiding freeway or night driving. If possible, the family, friends or neighbors should begin to assume a more active role in providing transportation, to prepare the person for the transition to driving cessation. The family can also be vigilant and report any decline in driving skills, since caregiver opinion of driving ability in demented older adults has been associated with road test performance (Iverson, et al, 2010). In fact, the process of transitioning the person from active driving to the use of alternative transportation options needs to begin while still driving, so community mobility can be maintained. Discussions should revolve around the inevitability of eventual driving cessation and mobility counseling should be repeated over time with both the individual and caregiver, to lay the groundwork for eventual driving cessation (Carr & Ott, 2010). When the person’s dementia has progressed to more severe cognitive impairment requiring close supervision, public, or supplemental transportation options are not likely to be a safe alternative unless accompanied by another individual (Vanderbur & Silverstein, 2006). The person’s participation in community activities should continue to the extent possible, but a more safe and reliable means of transportation needs to be identified and utilized early, such as a family or volunteer system (Womack & Silverstein, 2012). As discussed, mobility is critical to maintaining a sense of independence and dignity, and is important to maintaining health and wellness. Thus, the best strategy is to begin the conversation of transition to driving retirement early, so the client and family members can begin planning specific means to continue community participation. Based on clinical judgment (Level 3), the expert panel affirmed three consensus statements designed to maintain a person’s community mobility, specifically:

• Regardless of diagnosis, assessment, and recommendations for optimal and safest community mobility should be provided.

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• Regardless of the driving assessment outcome, when an individual is diagnosed with dementia, the general occupational therapist should start planning exploration of alternative transportation options early and begin to use these options to increase the person’s familiarity with them. • Occupational therapy practitioners need to know their legal and ethical obligations related to driving and community mobility. CONCLUSION A person with dementia will eventually need to cease driving a motor vehicle, but in the early stages of the disease, may still be able to drive safely. As one of the health care providers who work with persons with dementia, occupational therapy practitioners are in an ideal position to assess functional abilities and impairments that may affect driving safety and help guide clients, families, caregivers and physicians through the decision-making and driving assessment referral process as well as assist in the transition to safe transportation options. Based on the research evidence and clinical judgment from expert clinicians, eight consensus statements have been affirmed that will serve as guidelines for occupational therapy practitioners as they address driving with their clients who have dementia and with their caregivers. ACKNOWLEDGMENTS David Carr has funding through the National Institute of Aging, the Missouri Department of Transportation Highway Safety, support from Pfizer and Jannsen for Alzheimer’s drug studies, and has been a paid consultant for TIRF, ADEPT, AMA, and Medscape within the past two years. Declaration of interest: Carol Wheatley and Richard Marottoli report no conflict of interest. The authors alone are responsible for the content and writing of this paper. ABOUT THE AUTHORS Carol J. Wheatley, MS, OTR/L, CDRS, Driver Rehabilitation Specialist, MedStar Good Samaritan Hospital, Outpatient Rehabilitation Department, 5601 Loch Raven Blvd, Baltimore, MD 21239. E-mail: [email protected] David B. Carr, MD, Professor of Medicine and Neurology, Washington University at St. Louis, Clinical Director, Division of Geriatrics and Nutritional Science, Medical Director, The Rehabilitation Institute of St. Louis (TRISL), Parc Provence, 4488 Forest Park, St. Louis, MO 63108. E-mail: [email protected] Richard A. Marottoli, MD, MPH, Professor of Medicine, Yale University School of Medicine, Staff Physician, VA Connecticut Healthcare System, PO Box 208025, 333 Cedar Street, New Haven, CT 06520–8025. E-mail: [email protected] REFERENCES Adler G, & Silverstein NM. (2008). At-risk drivers with Alzheimer’s disease: Recognition, response, and referral. Traffic Injury Prevention, 9(4), 299–303.

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Consensus statements on driving for persons with dementia.

The presence of dementia can have a profound effect on a person's capacity for driving, and will lead to eventual cessation of driving and reliance on...
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