DOT HS 810 684

November 2006
Prepared for the Alzheimer’s Association Public Policy Division and

The National Highway Traffic Safety Administration, Washington, DC

Megan Vanderbur

Indiana University

Nina M. Silverstein, Ph.D.

Gerontology Institute and

College of Public and Community Service

University of Massachusetts Boston

Megan Vanderbur was supported in this project through an internship with the Alzheimer’s Association Public 

Policy Division, Washington, DC. Dr. Silverstein supervised Vanderbur in her preparation of this literature 

review. Dr. Silverstein was supported, in part, through a cooperative agreement with the National Highway 

Traffic Safety Administration, Department of Transportation, and through the Alzheimer’s Association. 

The views presented in this document are the authors’ only and do not represent stated policy for either the 

Department of Transportation or the Alzheimer’s Association. The authors acknowledge the support of 

Michael Splaine, Director of State Advocacy for the Alzheimer’s Association, and Esther Wagner, Program 

Analyst for the National Highway Traffic Safety Administration. The authors also acknowledge Elizabeth 

Johns of the University of Massachusetts Boston and Annetha Hall of the Alzheimer’s Association for their 

assistance with manuscript preparation.
3

EXECUTIVE SUMMARY ........................................................................................... 5

INTRODUCTION.........................................................................................................8

THE SCOPE OF THE ISSUE......................................................................................9

A Risk to Public Health: The Prevalence of Unsafe Older Drivers.............................9

The Safety of Drivers With Dementia.......................................................................... 10

The Consequences of Driving Cessation: Different Impacts for the

Individual With Dementia and the Caregiver............................................................ 11

Impact of Cessation for the Individual With Dementia................................................ 11

Impact of Driving Cessation on the Family................................................................. 12

CURRENT SCREENING AND ASSESSMENT PRACTICES................................ 14

Screening for Driving Safety: What Tests Should Be Used and Who

Is Responsible?.......................................................................................................... 14

Screening Processes................................................................................................... 14

Who Conducts the Screening ...................................................................................... 16

Monitoring Driver Safety: When Is the Time for Driving Cessation?....................... 18

Monitoring Those With Degenerating Abilities........................................................... 18

Compliance With Driving Assessments....................................................................... 19

State Policy Affecting Community Mobility: Variability Across the Country............ 19

State Programs........................................................................................................... 19

Fatality Prevention..................................................................................................... 23

The Effect on Individuals With Dementia.................................................................... 23

COMMUNITY MOBILITY ....................................................................................... 24

Current Status of Community Mobility for Nondrivers: What Are the

Options After Driving Cessation?.............................................................................. 24

Community Mobility for the Nondriving Older Person................................................ 24

Community Mobility for the Nondriving Disabled Older Person................................. 25

Factors in Community Mobility.................................................................................. 26

Transportation Programs for the Nondriving Older Person: Options and 

Shortcomings............................................................................................................. 27

Current Programs from Transportation Service Providers......................................... 27

Supplemental Transportation Programs..................................................................... 27

Program Efficacy ....................................................................................................... 27

The Community Mobility Needs of the Person With Dementia: Specialized 

Needs of a Vulnerable Population............................................................................. 28
4

IMPLICATIONS FOR PROGRAM AND POLICY................................................. 29

Current Policy Gaps: The Community Mobility Needs of Individuals

With Dementia........................................................................................................... 30

Public Transportation ................................................................................................ 30

Screening and Assessment .......................................................................................... 30

Licensing Policy Proposals Affecting Individuals With Dementia............................... 31

Proposed Initiatives Beneficial to Individual With Dementia ...................................... 31

The Benefits of Mobility Managers............................................................................. 32

Barriers to Improving Mobility: The Effects of Current Regulations ....................... 32

REFERENCES......................................................................................................... 35

APPENDICES

Appendix A................................................................................................................ 45

15 Key Federal Programs for Transportation Aid ...................................................... 45

Appendix B................................................................................................................ 47

The 5 A’s of Senior Friendly Transportation ................................................................47
5

EXECUTIVE SUMMARY

By the year 2030, 70 million Americans will be 65 or older (AARP, 2004).

Approximately 80 percent of this population will likely be driving themselves. And 

without appropriate and timely interventions, many are likely to be driving with 

Alzheimer’s disease (AD). Current estimates suggest that 2 percent of the population 65 

to 74, 19 percent of the population 75 to 84, and 47 percent of the population 85 and

older are likely to suffer from Alzheimer’s disease or a related disorder. By the year 2050,

the number of Americans with Alzheimer’s disease could range from 11.3 million to 16 

million (Alzheimer's Association, 2005). This significant portion of the aging population 

will eventually have its community mobility affected by the disease progression.

The focus of concern surrounding transportation for those with dementia has until

recently been on driving cessation. However, while it is important to be aware of issues

related to driver screening and assessment, equal attention should be devoted to cessation 

counseling and helping the driver move to the passenger seat. Currently, alternative

modes of transportation are not very “elder-friendly,” let alone “dementia-friendly.”

This paper reviews the available literature on community mobility and dementia,

beginning with driving and concluding with community-mobility options. The document

provides a starting point for addressing the policy, program, and research issues implicit

in finding ways to meet the community mobility needs of a population for whom driving

is no longer safe.

The Safety of Drivers With Dementia

Dementia is thought to affect many critical abilities needed for driving, including

perception and visual processing; the ability to maintain selective attention on particular

stimuli for extended periods of time; the ability to attend to multiple stimuli at once; the

ability to make correct judgments (such as which drivers have the right of way); and the

ability to react appropriately when pressured in a traffic situation (Janke, 1994; Uc et al.,

2004). In the early stages of their disease, individuals with dementia may be capable of

driving under normal conditions since the mechanisms of vehicle operation are usually 

well established within their long-term memories. But the driver may have difficulty

responding to new or challenging circumstances, and individuals in this stage are known to 

become lost while driving (Hunt, 2003; Silverstein, Flaherty, and Tobin, 2002). They may

stop scanning their surroundings and instead focus on looking straight ahead. As

individuals progress into moderate impairment, the ability to drive competently is highly 

compromised, as is insight into their level of skill impairment (Janke, 1994; Anstey,

Wood, Lord, and Walker, 2004). People with severe impairment are usually 

nonambulatory.
6

Monitoring Drivers With Degenerating Abilities

It is expected that physicians routinely evaluate patients diagnosed with a

dementia to determine the progression of their disease and thus are in a position to 

periodically see and talk to the patient. Maslow (2004) notes that serious coexisting

medical conditions, such as diabetes, may accompany dementia. In fact, older people

often suffer from one or more chronic conditions, for which they may be taking several

medications (Holte and Albrecht, 2004; Lococo and Staplin, 2005b).

Monitoring of driving ability, often by default, falls to the physician, and by itself

the presence of a chronic health condition should prompt a discussion about potential

impairment in driving skills, and polypharmacy issues should raise concerns as well; yet

driving abilities are not typically discussed during the physician visits. In addition,

physicians do not often refer patients for a driving competency assessment, nor are they 

present during actual driving evaluations.

Many State departments of motor vehicles (DMVs) recognize the need to 

periodically monitor those with dementia, although few have systems in place for doing

so. An opportunity exists in that DMVs see drivers periodically at the time of license

renewal (unless renewal is by mail or through the Internet). In a report on Medical

Advisory Board activity for the National Highway Traffic Safety Administration (Lococo

and Staplin, 2005a), 20 DMV jurisdictions reported that they train their licensing

personnel how to observe for impairing conditions, with four of the jurisdictions having

specialized training related to recognizing impairments in older adults.

States whose licensing laws specifically mention Alzheimer’s disease include

California and Pennsylvania. Oregon’s laws refer to individuals with cognitive

impairments while Florida, Georgia, Iowa, Kansas, Kentucky, Nebraska, Nevada, North 

Dakota, Rhode Island, South Carolina, Utah, Virginia, and the District of Columbia all

reference the need to monitor people with mental disease or impairment. All these

descriptions could be applied to the individual with dementia. A report submitted by a

health care professional or concerned citizen to the DMV in these States would most

likely require review and, in some instances, could be heard by the State Medical

Advisory Board.

Compliance With Driving Assessments

In a study by Adler, Rottunda, and Kuskowski (1999), 46 percent of licensed 

drivers with dementia of the Alzheimer’s type reported that they would be reluctant to 

discontinue driving based solely on a physician’s advice. Eighteen percent of drivers and

32 percent of their caregivers believed it was the physician’s responsibility to determine

when the patient was no longer able to drive safely. The majority of drivers (57%) and a

third (35%) of caregivers believed it was the responsibility of the individual with 

dementia to make that determination. There is also concern that even if impaired 
7

individuals do initially comply with driving assessments, the disease progression might

cause them to forget their decision and attempt driving. Officials in State transportation 

departments have also expressed concern regarding the lack of uniformity in driving

regulations from State to State. It is thought that some retirees may relocate to States with 

less stringent licensing procedures in an effort to maintain mobility longer (Bener, 2005).

This would be an especially dangerous practice for drivers with dementia, given the

importance of periodic assessment of driving skills.

Impact of Driving Cessation for the Individual With Dementia

For individuals with Alzheimer’s disease, losing the ability to drive has varying 

effects on their ability to remain active in the community and continue engaging in 

routine activities of daily living, such as shopping and going to medical appointments.

Adler et al. (1999) found that 68 percent of Alzheimer’s patients and caregivers believed 

that driving cessation would inconvenience the individual with Alzheimer’s. However,

fewer families expected difficulty, with 50 percent of the caregivers believing that

cessation 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 community mobility needs. One recent research report cited 

transportation as the main type of assistance that caregivers provide to care recipients,

with 82 percent of respondents (n = 1,247) reporting offering that form of assistance

(National Alliance for Caregiving and AARP, 2004).

The Community Mobility Needs of the Person With Dementia: Specialized Needs of a

Vulnerable Population

Once individuals with dementia are no longer able to drive safely, they are often 

unable to use public transportation systems as well (Rosenbloom, 2003). Those who 

become lost, easily confused, or cannot reason through complex situations while driving

are usually unable to navigate public transportation systems that require the ability to 

understand maps, routes, and schedules.

Little is known about what can be done for individuals with dementia in order to 

enable them to use public transportation: Studies evaluating public transportation use by

people with dementia have not yet been done (O’Neill and Dobbs, 2004). However, a

case study carried out by Adler, Rottunda, Bauer, and Kuskowski (2000) found that

transportation for those with dementia must involve as little waiting as possible and it

must offer very unrestricted hours and routes. Currently, most public transportation does

not have these options. Adapting the concepts of travel training and mobility

management, such as is done for disabled populations, might be a useful strategy for

people with dementia, particularly in the early stages of the disease process.
8

INTRODUCTION

This paper reviews the available literature on community mobility and dementia.

The document provides a starting point for addressing the policy, program and research

needs implicit in finding solutions for meeting the community mobility needs of a

population for whom driving is no longer safe.

The focus of concern surrounding transportation for those with dementia has until

recently been on driving cessation. However, while it is important to be aware of issues

related to driver screening and assessment, equal attention should be devoted to cessation 

counseling and helping the driver move to the passenger seat. Currently, alternative modes

of transportation are not very “elder friendly,” let alone “dementia friendly.”

Concern is warranted as best illustrated by demographic data. By the year 2030,

70 million Americans will be 65 or older (AARP, 2004). Approximately 80 percent of

this population will likely be driving themselves. Current estimates suggest that, 2 

percent of the population 65 to 74, 19 percent of the population 75 to 84, and 47 percent

of the population 85 and older are likely to suffer from Alzheimer’s disease (AD) or a

related disorder (Alzheimer's Association, 2005). By the year 2050, the number of

Americans with AD could range from 11.3 million to 16 million (Alzheimer's Association,

2005). This significant portion of the projected aging population will eventually have its

community mobility affected by the disease progression.
9

THE SCOPE OF THE ISSUE

By the year 2030, 70 million Americans will be 65 or older (AARP, 2004), and 

approximately 80 percent of this population will likely be driving themselves. Currently,

the private automobile is the primary mode of transportation for older adults, as it is for

other people. For many older people, driving is a necessity because the majority live in

suburban or rural areas, where an automobile is often the only mode of transportation 

(AARP, 2005). This section examines the risk that older drivers pose to themselves and

to others, and it also explores the consequences of driving cessation.

A Risk to Public Health: The Prevalence of Unsafe Older Drivers

The Safety of All Drivers 65 and Older

Based on crash rate per population group, older drivers are underrepresented.

Older Americans are among the safest drivers on the road. They are involved in the fewest

crashes, are more likely to wear seatbelts, and have the lowest rate of crashes due to 

alcohol impairment (National Center for Statistics and Analysis, 2002). However, when 

driver safety is assessed in terms of crashes per miles traveled, drivers of the oldest age

group (85+) are more likely to be involved in a crash than those in younger age groups

(Marottoli, 1998). Thus, although the oldest drivers have less exposure on the road, they

have more crashes per mile driven than other age groups (Massachusetts Institute of

Technology AgeLab, 2003). Tokoro (2004) notes similarities to the United States in the

lower levels of driving exposure among Japanese older drivers and suggests that

researchers increase their efforts to understand how older people use cars in their daily 

lives and what safety strategies can be developed. Hakamies-Blomqvist, Wiklund, and 

Henriksson (2005) caution that linear projections of older drivers’ crash involvement,

based on the growth of this age group and in anticipation of their increased presence in

traffic, are likely to be overly pessimistic. These authors demonstrated that, compared to 

the crash involvement of the general population in Sweden, there was a relative decrease

in older drivers’ crash involvement per licensed driver and per active driver in the period

1983–1999. However, once in a crash, drivers 70 and older are also more likely to suffer

severe injuries, and they have the highest probability of being fatally injured (Langford,

2004a, 2004b).

The U.S. Department of Transportation (2003) reports that the rate of driver

fatality per 100 million miles driven has begun to increase among the 55 to 59 age group.

For the population 80 to 84, the rate has tripled. This is thought to be due in large part to 

elder frailty. Crash impacts that a younger person could survive may be fatal for older

people simply because their bodies are more fragile and they are more likely to suffer

from a pre-existing illness that may complicate medical treatment (U.S. Department of

Transportation, 2003). The higher fatality rate may also be partially due to the types of

crashes that seniors are more likely to experience, such as side-impact crashes at
10

intersections. Langford (2004b) believes the higher fatality rate may also be due to elderly 

individuals having problems with gap selection, traffic complexity, high speeds, high

traffic volume, and restricted sight distance.

A recent AARP survey (2005) found that most of the Nation’s older population 

lives in rural or suburban settings, and this pattern is expected to continue as baby 

boomers age. Rural areas and the areas close to home that older drivers frequent are the

most common sites for crashes. Older people also rarely use highways and are more likely 

to travel across town in stop-and-go traffic, which presents a greater likelihood of crash 

involvement (AARP, 2004). Thus, older drivers are likely to drive in more dangerous

settings than other age groups (AARP, 2004).

The Safety of Drivers With Dementia

Dementia is thought to affect many critical abilities needed for driving, including

perception and visual processing; the ability to maintain selective attention on particular

stimuli for extended periods of time; the ability to attend to multiple stimuli at once; the

ability to make correct judgments (such as which drivers have the right of way); and the

ability to react appropriately when pressured in a traffic situation (Janke, 1994; Uc et al.,

2004). In the early stages of their disease, individuals with dementia may be capable of

driving under normal conditions since the mechanisms of vehicle operation are usually 

well established within their long-term memories. But the driver may have difficulty

responding to new or challenging circumstances, and individuals in this stage are known to 

become lost while driving (Silverstein, Flaherty, and Tobin, 2002). They may stop

scanning their surroundings and instead focus on looking straight ahead. As an individual

progresses into moderate impairment, the ability to drive competently is highly 

compromised, as is insight into the driver’s level of skill impairment (Janke, 1994;

Anstey, Wood, Lord, and Walker, 2004). People with severe impairment are usually 

nonambulatory.

Studies relating the yearly crash rates of older Americans with dementia to those

of healthy older Americans generally show an inflated crash rate for those with dementia

(Hunt, 2003; Janke, 1994; Marottoli, 1998). However, such studies are often done with a

small number of participants and therefore have limited generalizability. While caution 

should be exercised in interpreting these studies, a pattern of concern is nevertheless

emerging. Researchers at Washington University in St. Louis estimated that

approximately 30 percent of demented drivers would have a crash under normal driving

circumstances at some point during the moderate stages of the disease, leading to the

conclusion that there is an increased risk to public health (Morris, 2004). The crash risk 

was shown to be related to the duration of the disease and to gender. Specifically, men in 

the moderate stages of the disease were shown to be the most unsafe. A study conducted 

by the California Department of Motor Vehicles, using male drivers only, demonstrated 

that men with AD are less likely than men without AD to assess their driving skills
11

accurately and that their caregivers are less likely to recognize the problem (Janke, 1994).

Such studies also report that individuals with dementia are less likely than healthy older

drivers to realize that their driving is unsafe. The Washington University study found that

approximately 50 percent of individuals ceased driving within three years of diagnosis.

Whether such cessation was voluntary was not explained; however, given that loss of

insight is common, it is unlikely that drivers with Alzheimer’s disease or related 

dementias would stop driving solely because of self-assessment.

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
12

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.
13

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.
14

CURRENT SCREENING AND ASSESSMENT PRACTICES

Despite acknowledgment among many researchers that people with dementia

should cease driving at some point during the disease, there is no universally accepted test

or standard that defines when driving should stop (Lincoln, Radford, Lee, and Reay,

2004). Who should test, how extensive it should be, and what constitutes a valid test are

many of the questions that remain without definitive answers. This section reviews

current screening practices including the differences in State policies related to driving

assessment.

Screening for Driving Safety: What Tests Should Be Used and Who Is

Responsible?

Screening Processes

Although research provides insights about why driving is difficult for those with 

dementia, it has yet to determine what degree of cognitive impairment constitutes an 

unacceptable risk (Vegega, 1990). As a result, many clinicians have sought methods by

which fitness to drive may be determined. Much of the literature surrounding this

question focuses on the Mini-Mental State Examination (MMSE) and additional

neuropsychological tests to rate cognitive ability and estimate driving fitness from the

results (Adler et al., 2000; Lincoln et al., 2004). However, the MMSE was not designed 

to be, nor has it been validated as, a predictor of driving safety; and indeed studies have

shown it to be inconclusive at predicting level of crash risk (Dobbs et al., 1998; Fox,

Bowden, Bashford, and Smith, 1997; Lincoln et al., 2004; Shua-Haim and Gross, 1996)

and also that it fails to evaluate perception, attention, and motor skills, three areas

thought to be essential to competent driving (Reger et al., 2004; Vegega, 1990). Uc et. al

(2004), in assessing navigation and safety errors in comparing a sample of 32 people with 

probable AD with 136 neurologically normal adults, concluded that drivers with AD

made more errors than the normal group on a route-following task that placed demands on 

driver memory, attention, and perception.

Other tests besides the MMSE have been used in assessments of driving fitness.

The Clinical Dementia Rating (CDR) scale is used by neurologists to classify

Alzheimer’s disease severity. The scale is based on categories that include memory,

judgment, problem solving, and personal care. In 2000 the American Academy of

Neurology (AAN) released a review recommending that Alzheimer’s patients with an 

impairment level of CDR 1 should not drive an automobile. In addition, it recommended

that individuals with a CDR of 0.5 be referred for a professional driving evaluation as

they may pose a serious traffic safety problem (Dubinsky, 2000). It should be noted that

the AAN is currently reviewing its guidelines.
15

The Useful Field of View test (UFOV) has also been used to detect cognitively 

impaired drivers. This test measures speed of mental processing when the attention of an 

individual is divided, as it often is during driving. The test was used during the Maryland 

Pilot Older Driver Study conducted by NHTSA in 2003 as one of a number of tests to 

determine driving ability (National Older Driver Research and Training Center, 2003). The

Gross Impairment Screening tool (GRIMPS), developed by the NHTSA, has also been

used for driver evaluation of individuals with dementia. While the CDR, UFOV, and

GRIMPS have not yet been validated for this purpose, researchers are using these tools in

studies of cognitive and perceptual factors in aging and driving performance. Rinalducci,

Mouloua, and Smither (n.d.) observe that changes in older drivers might best be measured

using neurological measures and the UFOV.

However, neuropsychological tests have been found to be no more reliable than 

the MMSE, despite the fact that they can measure specific areas of cognitive ability,

including visual-spatial skills, attention, and choice reaction time. Such tests measure the

ability to perform nonspecific tasks, while driving involves task-specific processes that

are learned through practice (Withaar, Brower, and van Zomeren, 2000). It is thought that

only through a combination of tests can driving abilities be evaluated in a valid way 

(Hunt, 2003; Lincoln et al., 2004; Reger et al., 2004). Cognitive tests alone are not

sufficient to determine fitness to drive. It is essential to develop some battery of tests

that can distinguish safe drivers, those who are unsafe, and individuals with dementia who 

need further evaluation. Such a test would reduce the number of individuals needing

further evaluation and would result in less cost for screening programs (Lococo and

Staplin, 2005a).

Some researchers uphold on-road driving assessments by experienced driving

evaluators as the gold standard to evaluate driving abilities (Wang, Kosinski,

Schwartzberg, and Shanklin, 2003). The DriveABLE Program, developed by Dr. Allen 

Dobbs at the University of Alberta, is an example of an evaluation program based on eight

years of research on the driving abilities of those with mental impairments (Dobbs et al.,

1998). The program consists of two phases, starting with in-office testing of cognitive

abilities and proceeding to in-car testing when necessary.

Snellgrove (2005) reports on a new cognitive screening instrument, the Maze

Task, developed to assess the competence of drivers with mild cognitive impairment

(MCI) or early dementia. In a study of 115 community-dwelling older people, 50 percent

of those with MCI failed the task and 75 percent of those with early-stage dementia

failed. This task correlates with known measures of attention, visuoconstructional skills,

and executive functions of planning and foresight and underscores the concern related to

safe driving among people with early-stage dementia or MCI.
16

Some argue that individuals with dementia who need driving evaluations should be

assessed multiple times in multiple settings (Lococo and Staplin, 2005a). This is believed 

to be necessary to counteract the “good day/bad day” behavior of Alzheimer’s disease;

evaluators must assure that competency is constant and not the result of an individual

having a good day. Advocates of simulator use believe that the simulator more easily 

addresses that concern. Driving simulators that score safety error are also believed by

some researchers to be effective, and some studies have shown them to correlate directly

to driving evaluators’ assessments (Szlyk et al., 2002). Such simulators have multiple

advantages in that they require less training for staff and do not put evaluators in cars

with potentially dangerous drivers. Concern has been raised, however, about the

simulators’ ability to replicate the vehicle environment accurately. They also induce

motion sickness in some test-takers.

Who Conducts the Screening

When nothing more than basic cognition tests are done, a physician is usually

responsible for the testing. However, physicians generally dislike being designated the

“licensing gatekeeper” (Skinner and Stearns, 1999). They also express concern about the

potential to disrupt the rapport they have established with patients and cite insufficient

time during the office visit to discuss driving (Silverstein and Murtha, 2001). Where no

other provisions are in place, responsibility for assessment typically shifts between the

Department of Motor Vehicles (DMV) and licensed medical practitioners (Skinner and

Stearns, 1999). When asked, individuals with dementia mentioned both themselves and

their family members as better evaluators of their driving abilities than their physicians

(Adler et al., 1999; Adler and Kuskowski, 2003). Ott et al. (2005) studied a cross-section 

of 50 drivers with mild dementia and compared clinicians’ safety assessments with those

of a professional driving instructor. The researchers noted that while clinicians who were

especially trained in dementia assessment were the most accurate predictors among the

range of clinicians (62 to 78%), clinicians’ assessments alone was not adequate to 

determine driving competence with mild dementia. McKenna, Jefferies, Dobson, and

Frude (2004) also provide useful insight regarding a cognitive battery to predict who will

fail an on-road driving test, demonstrating 100 percent accuracy for subjects less than 69 

years old; more research is needed with older age samples, however. Their cognitive

assessment tool, the Rookwood Driving Battery, is described in McKenna et al. (2005).

When the decision to stop driving is made, Adler and Kuskowski (2003) found

that, among those they surveyed, the physician was most often identified as the decision 

maker. In September 2003, the American Medical Association (AMA), in conjunction 

with the National Highway Traffic Safety Administration, published a Physician’s Guide

to Assessing and Counseling Older Drivers (see Wang et al., 2003). In this manual, the

importance of driver evaluation is discussed, including what the AMA sees as the ethical
17

obligation of physicians to assess drivers for the safety of society. The AMA asserts

that, in the case of a known unsafe driver, the threat to the public safety outweighs

considerations of the doctor-patient relationship.

The Physician’s Guide recommends two brief tests for conducting a driving

evaluation. The Trail-Making Test, Part B (only), and the Clock Drawing Test (CDT)

with the Freund Clock Scoring for Driving Competency are considered by the AMA to be

useful in identifying people who should be referred to a specialist for more in-depth

screening (Wang et al., 2003). Freund et al. (2005) report that the CDT is a reliable, valid,

time-effective screening tool for primary-care physicians to use in identifying at-risk 

drivers in need of further evaluation.

However, primary care physicians may not be the best qualified to evaluate driver

safety for individuals with dementia. Brown, Ott et al. (2005) found that general

practitioners’ assessments of drivers’ ability matched those of a qualified driving

evaluator just 72 percent of the time. The same study showed that only experienced 

neurologists who were able to conduct full patient evaluations were able to predict driver

safety with accuracy comparable to that of the driving evaluator.

When an evaluation calls for an in-depth screening, patients might be referred to a

driver rehabilitation specialist (DRS). These are professionals who specialize in assessing

driver ability and implementing strategies to increase driver safety. They also make

recommendations about when and where individuals should drive, or whether driving

should cease altogether (Wang et al., 2003). Such evaluations are most effective when the

examiner has the complete medical history of the individual being assessed (Marottoli,

1998), but the history may not be available because of issues related to doctor/patient

privilege or the patient’s unwillingness to cooperate. Some occupational therapists also 

provide similar evaluation and counseling services. The American Occupational Therapy

Association (AOTA) recently launched an Older Driver Initiative aimed at increasing the

number of occupational therapists (OTs) who offer driving therapy and evaluations.

(AOTA [2004] describes the OT’s role in driving and transportation alternatives for older

adults.) An initial evaluation session can cost up to $500, however, and Medicare,

Medicaid, and private insurance companies often do not cover the cost of these services.

Some States mandate driver screenings, either upon diagnosis and referral by a

physician or when the driver reaches a specified age. The effectiveness of such practices

remains to be studied extensively in the United States. Currently, responsibility for

recognizing driver impairment lies chiefly with the impaired drivers themselves and their

family members, a risky situation given that dementia patients often lack the insight to 

evaluate their own abilities and their caregivers may not understand the implications for

community mobility of an Alzheimer’s diagnosis (Silverstein and Murtha, 2001). For
18

example, Adler, Rottunda, and Kuskowski (1999) found that 43 percent of caregivers

surveyed believed that the driver with dementia would be able to continue driving

throughout the course of the disease. While it is true that many older adults begin to 

modify their driving as their abilities decline (Brayne et al., 2000), individuals with 

Alzheimer’s disease are often unable to recognize the loss of their abilities (Molnar, Eby,

and Dobbs, 2005; Wild and Cotrell, 2003).

Monitoring Driver Safety: When Is the Time for Driving Cessation?

Monitoring Those with Degenerating Abilities

Monitoring, like assessment, often falls to the primary-care physician. Patients

with dementia are routinely evaluated to determine the progression of their disease during

regular office visits. Maslow (2004) notes that serious medical conditions may coexist

with dementia. Some of these, such as diabetes, should by themselves prompt discussion 

about driving, yet this subject is not typically discussed during physician office visits.

Moreover, many older people have multiple chronic health conditions and may take

several medications for them, another reason for concern about critical driving skills

(Lococo and Staplin, 2005b). However, physicians do not often refer patients for driving

competency assessment, nor are they present during actual driving evaluations. In their

discussion of the CanDRIVE research initiative, Molnar, Byszewski, Marshall, and ManSon-Hing (2005) make similar observations regarding physician assessment of fitness to 

drive in Canada. Middleton, Westwood, Robson, and Kok (2005) in the UK report on the

AGILE project (AGed people Integration, mobility, safety, and quality of Life

Enhancement through driving) review a new modular, older-driver assessment system cofunded by the European Union (See also Middleton et al., 2003). Thus, the topic of

driving skill assessment is a concern that is being raised across the globe.

Departments of Motor Vehicles see drivers periodically at the time of license

renewal (unless renewal is by mail or through the Internet). Researchers in Australia are

working on a model license-reassessment program for older drivers in their country

(Fildes et al., 2001). In a report on Medical Advisory Board activity for NHTSA

prepared by Lococo and Staplin (2005a), 20 DMV jurisdictions indicated that they train

their licensing personnel on how to observe for impairing conditions, with four of the

jurisdictions having specialized training in impairments in older adults (Szlyk et al., 2002).

As noted previously, 1 in 10 people over 65, and nearly half of those over 85,

have Alzheimer’s disease or a related form of dementia (Alzheimer's Association, 2005).

This has prompted five jurisdictions—the District of Columbia, Illinois, New Hampshire,

Oregon, and Pennsylvania— to implement age-based testing as a way to screen for highrisk drivers. In these programs, the start age of screening varies from a mandatory test at

age 75 in Pennsylvania to random selection starting at age 40 in Pennsylvania. Other

jurisdictions shorten the renewal cycle for older drivers while still others eliminate the

option to renew by mail, necessitating in-person visits.
19

Lococo and Staplin’s (2005a) report for NHTSA contains recommendations concerning

how often people with dementia should be reevaluated. These include multiple on-road 

evaluations in different areas to be conducted every three to six months. Adoption of such 

a program would have significant implications for people with dementia and their families,

especially with regard to the cost in money and time involved in multiple-day testing.

In California, Delaware, Nevada, New Jersey, Oregon, and Pennsylvania,

physician reporting is required for drivers who are medically impaired and may suffer a

loss of consciousness. States that encourage or allow physician reporting, but do not

make it mandatory, are Alabama, Arizona, Arkansas, Colorado, Connecticut, Florida,

Georgia, Idaho, Iowa, Illinois, Kentucky, Maine, Maryland, Michigan, Minnesota,

Montana, Nebraska, New Hampshire, New Mexico, North Carolina, North Dakota,

Rhode Island, West Virginia, Wisconsin, and Wyoming. The remaining States may not

encourage reporting, or they may consider it a violation of patient/doctor privilege.

Compliance with Driving Assessments

In a study by Adler, Rottunda, and Kuskowski (1999), 46 percent of licensed 

drivers with dementia of the Alzheimer’s type reported that they would be reluctant to 

discontinue driving based solely on a physician’s advice. Eighteen percent of drivers and

32 percent of their caregivers believed it was the physician’s responsibility to determine

when the patient was no longer able to drive safely, but the majority believed that the

individual with dementia should make that determination. Some observers worry that

even if impaired individuals do initially comply with driving assessments, the disease

progression might cause them to forget their decision and attempt driving. Anecdotal

evidence supports this concern, but no validation study has yet been done (Sainz, 2004).

Officials working in State transportation departments have also expressed concern 

regarding the lack of uniformity in driving regulations from State to State. It is thought

that some retirees may relocate to States with less stringent licensing procedures in an

effort to maintain community mobility longer (Bener, 2005). This would be an especially 

dangerous practice for drivers with dementia, given the importance of periodic assessment

of driving skills.

State Policy Affecting Community Mobility: Variability across the Country

State Programs

Licensing drivers is within the States’ authority. Although the American 

Association of Motor Vehicle Administrators (AAMVA) recently began a project, in 

cooperation from the NHTSA, to develop model guidelines for State DMVs, currently 

51 separate sets of regulations define licensing procedures across the States and the

District of Columbia. An example of the variety in these regulations can be found in
20

driver-reporting laws that apply to physicians. Currently, 6 States require some level of

physician reporting. Some are very specific about the types of conditions that can be

reported, but others provide little guidance. Twenty-two States have some sort of

protocol for physicians to report voluntarily but do not require it. Five States encourage

self-reporting, and 44 States allow a family member to report an impaired driver. States

also follow up on these reports in a number of ways; all notify the individual that they

have been reported, and most give the option of contesting a report stating that the driver

is unsafe. Driver notification is most commonly done by mail, and significant time can

elapse between reporting and notification.

Following are examples of several current programs. The first six require physician

reporting while the last three employ alternate methods, including reporting by the

individual driver or by nonmedical personnel. For more information regarding specific

State regulations, the appendix of the Physician’s Guide to Assessing and Counseling 

Older Drivers (Wang et al., 2003) contains a State-by-State quick reference guide to 

licensing and renewal procedures. The Web site of the American Association of Motor

Vehicle Administrators contains a similar guide as well as a summary of the activities of

the various State medical advisory boards. That more-than-400-page report was prepared 

by TransAnalytics, LLC. (Staplin and Lococo, 2003).

California

Physicians in California are specifically required to report all patients diagnosed 

with Alzheimer’s disease. In the absence of a diagnosis of any disorder that is

characterized by lapses in consciousness, they are not required to report unsafe drivers,

although they are authorized to do so if they feel it is in the public’s best interest.

Physicians are protected from any legal liability for reporting conditions that are required

by law. The California DMV is responsible for notifying and following up with reported 

drivers. Follow-up involves a driving evaluation and determination of an appropriate

course of action, which may include revocation of the license or ordering periodic

reexaminations. The California DMV also accepts reporting from other sources, including

individual drivers and their family members.

Oregon

Oregon is in the process of phasing in a statewide, mandatory, medicalimpairment–based reporting system that requires medical personnel who qualify as

primary care providers to report people with functional or cognitive impairments that

cannot be corrected or controlled by surgery, medication, driving modifications, or

adaptive techniques. Physicians, law enforcement officials, family members, and friends

may also report drivers who are unsafe because of their medical conditions. The license of

the reported individual is immediately suspended, and, for individuals with dementia, a

medical file and driving record are sent to the State Health Office to determine if the

individual is safe to drive. The individual may request the opportunity to demonstrate

fitness to drive via written and on-road tests.
21

Delaware

Physicians in Delaware are required to report all citizens who are subject to loss

of consciousness due to disease of the central nervous system. Failure to file a report is

punishable by a fine of $5 to $50. Drivers are notified of the report, and their licenses are

suspended until further examination takes place. Legal immunity is available to the

reporting physician. The Delaware DMV also accepts reports from courts, other DMVs,

police, and family members, and it protects the identity of all reporters. If the DMV

receives questionable reports, they are sent to the Delaware Medical Advisory Board for

evaluation.

New Jersey

New Jersey statutes require all physicians to report to the DMV any patients

who experience a recurrent loss of consciousness, but the regulations do not specifically 

mention individuals with dementia. The license of the reported driver is then scheduled to 

be revoked, but that driver may request due process in an administrative court. While the

physician is provided with legal immunity, the State offers no legal protection or

anonymity to other reporters. The police, family members, other DMVs, and courts may 

also report unsafe drivers, but the report must be signed and anonymity is not protected.

Nevada

In Nevada, physicians must report patients who experience any disorder

characterized by a lapse of consciousness, but the regulations do not specifically mention 

individuals with dementia. The DMV notifies the reported driver by mail and may 

suspend that driver’s license. Legal immunity and protection are given to the reporting

physician. Family members, the courts, other DMVs, and the police are also permitted to 

submit reports, and all are granted anonymity if it is requested.

Pennsylvania

Pennsylvania law requires all physicians or people authorized to diagnose or treat

disorders and disabilities to report any condition that may affect driving safety to the

Pennsylvania Department of Transportation (PENNDOT) within 10 days of diagnosis.

Alzheimer’s disease is specifically mentioned as a reportable condition. PENNDOT then 

notifies the individuals and asks them to submit specified medical forms in order to 

determine their fitness to drive or need for assessment. The State provides that no civil or

criminal actions may be brought against any person or agency for providing the

information required. PENNDOT also accepts reports from courts, other DMVs, police,

emergency personnel, family members, caregivers, and neighbors. While all reports must

be signed, the department protects the identity of the reporter.
22

Illinois

Illinois physicians are encouraged to inform patients of their responsibility to 

report to the Secretary of the State any medical condition that may affect their ability to 

operate a motor vehicle safely. The driver is notified of the referral and required to submit

a medical report. The DMV determines if further action is needed. Illinois accepts

reporting from courts, other DMVs, law enforcement officials, members of the Illinois

medical advisory board, National Driver Register, Problem Driver Pointer System,

Secretary of State, management employees, the Federal Motor Carrier Safety

Administration, and driver rehabilitation specialists. Because Illinois is not a mandatory

reporting State, there is no legal protection for reporters.

Florida

Florida law allows any person with knowledge of a licensed driver’s mental or

physical driving impairment to submit a report to the Department of Highway Safety and 

Motor Vehicles (DHSMV). After notifying the driver in writing, the department

investigates the report and takes action if it appears to be warranted. The law provides

that no report can be used as evidence in any civil or criminal trial or proceeding, and 

anonymity is available.

Kansas

Kansas law allows physicians to provide information concerning the mental or

physical condition of any patient only if patients sign a form authorizing the release of

such information to the State DMV. Upon such notification, the DMV informs the

individual via a written referral. Physicians who submit a report in good faith are

protected from civil actions for damages, but all such reports must be signed and

anonymity is not preserved since affected drivers may request copies.

Maryland

The Maryland Motor Vehicle Administration (MVA) works with physicians,

family members, and people with Alzheimer’s to ensure they are on the road safely for as

long as possible. Currently, the MVA’s Medical Advisory Board reviews more than 

13,000 drivers per year. Medical conditions referred to the board for investigation include

any disorder that impairs the ability to make decisions or produces any kind of confusion.

When taking medical histories of patients with dementia, Maryland physicians are

asked to review their driving histories as well. Physicians are also encouraged to request

relevant information from family members. Physician concerns are then reported in 

writing to the MVA, which may order screening tests to determine the fitness to drive of

the person with Alzheimer’s, including an on-road test. Maryland law grants immunity to 

any physician reporting in good faith.
23

If the person with Alzheimer’s has no treating physician, family members may contact

the Motor Vehicle Administration to request an evaluation. A phone call or letter from a

family member is sufficient to initiate a review, and the report is kept confidential. The

Medical Advisory Board asks for a short description of the driving problems or incidents

that are of concern. The family member’s referral initiates a request for more information 

on the driver’s medical condition from a doctor, family members, and from that driver.

Fatality Prevention

Currently, there is no information concerning the effectiveness of fatalityprevention programs. Most are too new for such statistics to be gathered. (For example,

Oregon’s law was passed in 2003, and implementation was only completed in 2005.)

However, a study by Grabowski, Campbell, and Morrisey (2004) examined the efficacy 

of State licensing regulations by looking at all fatal crashes in the United States during the

years 1990–2000, as identified by the Fatality Analysis Reporting System. The study

determined that State-mandated vision and road tests, and more frequent license renewals,

were not effective in reducing fatality rates among older drivers. Only in-person license

renewal had any effect on driver fatality, and then only for the oldest drivers (those 85 

and older). This effect may be due to driver self-assessment that causes those in the 85-

and-older population group not to attempt to renew their licenses. This could possibly

result in safe drivers being taken off the road too soon due to a desire to avoid the process

of license renewal (Grabrowski et al., 2004).

The Effect on Individuals with Dementia

Most of the programs described above reference the need for periodic monitoring

of drivers with dementia. States whose driving laws specifically mention Alzheimer’s

disease include California and Pennsylvania. Oregon’s laws refer to individuals with 

cognitive impairments, while the District of Columbia, Florida, Georgia, Iowa, Kansas,

Kentucky, Nebraska, Nevada, North Dakota, Rhode Island, South Carolina, Utah, and

Virginia all reference the need to monitor those with some degree of mental disease or

impairment. All of these descriptions could include the individual with dementia. A report

submitted to the DMV in these States would most likely require review and, in some

instances, could be heard by the State Medical Advisory Board.

The second part of this literature review focuses on what happens when the driver

with dementia moves into the passenger seat. What happens to the person’s ability to get

around in their community and continue engaging in quality-of-life activities after driving

cessation?
24

COMMUNITY MOBILITY

A national travel survey referenced in a 2004 report (U.S. General Accounting

Office, 2004) concerning the community mobility of older people found that 90 percent

of trips taken by older people are by automobile, either as passengers or drivers. For the

remaining trips, 8 percent were walking and 2 percent were on public transportation. For

most individuals, however, driving expectancy is significantly less than life expectancy.

On average, men outlive their ability to drive by 6 years; women outlive their driving 

ability by 10 years (Foley, Heimovitz, Guralnik, and Brock, 2002). Research suggests

that more than 600,000 people 70 and older stop driving each year and become dependent

on others to meet their transportation needs. Poor vision, memory impairment, and an 

inability to perform one or more activities of daily living are common reasons for older

people to stop driving. This section examines transportation options for seniors, and

discusses the specialized community mobility needs of the individual with dementia. This

section is not meant to be exhaustive. Readers who wish to read more about community

transportation options are referred to the Transit Cooperative Research Program (TCRP)

at www.tcrponline.org.

Current Status of Community Mobility for Nondrivers: What Are the Options?

Community Mobility for the Nondriving Elder

According to a 2001 report from the National Household Travel Survey conducted 

by the U.S. Department of Transportation’s Bureau of Transportation Statistics, and the

Federal Highway Administration, 21 percent of seniors 65 and older do not drive.

Moreover, people 85 and older are especially likely to be nondrivers (U.S. General

Accounting Office, 2004).

Currently, 15 Federal programs contain provisions for the mobility needs of

disadvantaged seniors (see list in Appendix A). These programs are considered senior

accessible if they are designed specifically for seniors, if seniors are included in the eligible

population, or if they offer reduced fares for the elderly (U.S. General Accounting Office,

2004). These programs are generally overseen by Area Agencies on Aging (AAAs), which 

can also guide States in assessing seniors’ transportation needs. However, most AAAs

only modestly address senior mobility on the statewide level, citing their perception that

local agencies make a higher priority of other programs for seniors.

On February 24, 2004, President George W. Bush signed Executive Order

13330(Bush, 2004). This executive order established the new Interagency Transportation 

Coordinating Council on Access and Mobility, which was charged with coordinating 62

separate Federal programs in nine departments that provide funding for human services

transportation. The latter is defined in the order as any of the broad range of programs

designed to meet the needs of transportation-disadvantaged populations, including the

elderly, individuals with disabilities, and those with low incomes. The coordinating
25

council established the United We Ride initiative to implement the executive order. .This

initiative is intended to eliminate duplication and ultimately to lower operating costs for

transportation providers. People in need of transportation are also expected to benefit

from enhanced transportation options and higher quality of services. The United We Ride

initiative is also in the process of developing a Transportation Technical Assistance

Clearinghouse, which will offer resources for transportation providers to improve their

accessibility and staff training.

According to the U.S. General Accounting Office (GAO) (2004), the needs of

older people who depend on public transportation are not being met, but there is little

information about the extent of these unmet needs. Though 75 percent of nondrivers 75 

and older reported satisfaction with their community mobility resources, it is believed 

that these seniors obtain transportation largely from family members and friends. Seniors

without access to family members or those living in nonurban areas are likely to have

unmet needs that are greater than those of older people who live near family members. A

2001 AARP report referenced by the GAO (2004) found that senior nondrivers accepted 

rides from other people more than any other transportation option.

Community Mobility for the Nondriving Older Person with Disabilities

Two Federal departments are primarily responsible for addressing mobility needs

among older individuals with disabilities: the Department of Transportation (DOT) and 

the Department of Health and Human Services (HHS). The DOT offers targeted funding 

to State and local jurisdictions to develop and run transportation programs via Formula

Grants for the Elderly and Persons with Disabilities, Formula Grants for Other Than 

Urbanized Areas, Urbanized Area Formula Grants, and Capital Investment Grants. The

DOT also oversees the enforcement of the Americans with Disabilities Act (ADA) as it

relates to transportation., Under the civil rights legislation, public transportation must

accommodate people with disabilities. Where fixed-route bus service exists, for example,

public transportation operators must also provide paratransit services. However, this

applies only to areas already served by fixed-route transit and does not affect areas that

have no or limited public transportation. Initiatives like United We Ride are attempting to 

address these shortcomings.

Medicaid provides health care benefits that include transportation to medical

appointments. Approximately $1.8 billion are spent annually to provide about 110 

million trips, costing about $16 per trip, according to the AARP study previously 

mentioned (GAO, 2004). Because Federal law permits them to do so, the States have

adopted many different approaches to Medicaid access requirements. These range from

comprehensive programs to those that rely on local private services. In addition, due to 

the new program of Medicaid waivers intended to encourage home and community-based 

services, two thirds of the States have implemented programs that provide for essential

trips (such as for grocery shopping) to be paid for with Medicaid dollars.
26

It should be noted that Medicare does not provide transportation help for

individuals with disabilities except for emergency transportation in an ambulance. This

restriction is a source of controversy among transportation advocates, who argue that

many emergency trips to the hospital could be avoided through increased access to 

preventive care at the doctor’s office. Similarly, emergency trips may be used 

inappropriately for nonemergency episodes.

The Department of Transportation has published rules regarding the scope of

public transportation services in an effort to make them more accessible to people with 

disabilities. Nevertheless, some still cannot use these facilities or the ADA paratransit

system currently in place. Because it is limited to “curb-to-curb” service, ADA

paratransit rules do not necessarily specify provision of support to would-be users who 

have cognitive impairments. These rules do not require the availability of a responsible

person to assist the disabled individual at their destination. More comprehensive services

are commonly referred to as “door-through-door” services and are not generally offered

directly by Federal programs. The U.S. Administration on Aging is currently conducting a

study of the benefits and costs of door-through-door services.

Factors in Community Mobility

Federal transportation programs are designed to target seniors most at risk of

having unmet transportation needs related to deficiencies in six major areas: ability to 

drive; availability of an informal network of family or friends who drive; access to 

transportation provided by nonprofit community institutions; access to public

transportation; adequate income; and good health. Seniors who are transportation 

disadvantaged are likely to have particular difficulty with transportation to multiple

destinations, life-enhancing trips (e.g., visits to spouses in nursing homes or cultural

events), and trips to nonurban areas (U.S. General Accounting Office, 2004).

The growth of the 85-and-older population is projected to occur largely outside of

centralized areas that have public transportation already in place (Koffman, Raphael, and

Weiner, 2004). The majority of the growth is expected to occur in rural areas and in 

recently established suburbs that have yet to set up reliable and easy-to-use public

transportation. Some organizations have also begun to consider the mobility and service

needs of residents of “frontier communities,” so-called because they are completely 

removed from such direct services as respite care and adult day care. They are classified

as being at least 60 miles and/or 60 minutes from the nearest market center and, thus,

many critical health and social services. The Alzheimer’s Association is one organization 

attempting to identify and provide services for remote populations with the convening of

the first “Frontier Conference” in 2005.
27

Transportation Programs for the Nondriving Older Person: Options and

Shortcomings

Current Programs From Transportation Service Providers

The Federal government has traditionally provided transportation to and from the

services it provides, usually by partnering with local agencies and nonprofit organizations

that already provide services and funding the expansion of these services (U.S. General

Accounting Office, 2004).

Supplemental Transportation Programs

The term “supplemental transportation programs” or “STPs” was coined to 

encompass both formal and informal programs (Beverly Foundation, 2001a). The Beverly 

Foundation suggests that such supplemental transportation programs effectively meet the

requirements of its “5 A’s of Senior Friendly Transportation”: availability, accessibility,

acceptability, affordability, and adaptability (Beverly Foundation, 2001b). (See Appendix

B for further information on the 5 A’s). STPs exist in many communities across the

country, often using volunteer drivers to transport riders to locations that are not covered

by Federal rules, such as medical appointments. The importance of these trips to older

people’s independence and dignity is often repeated. One example of a long-standing

STP is the Independent Transportation Network (ITN), which originated in Westbrook,

Maine. The ITN is currently involved in a national rollout called ITNAmerica, with 

programs developing in Orlando and Santa Monica.

Program Efficacy

Groups such as AARP have conducted surveys in which as many as 75 percent of

respondents 75 and older respond positively when asked if they are “satisfied with their

mobility” (Koffman et al., 2004). However, the U.S. General Accounting Office (2004)

found—through interviews with Federal officials, evidence from nationally published 

research, and reports from local aging service providers—that seniors who are successful

in meeting their transportation needs are often doing so with help from their families or

by living in transit-rich cities. The GAO also found that seniors who rely on alternate

modes of transportation often have difficulty making trips for which the car is better

suited, including life-enhancing trips, and that all community mobility needs are less likely 

to be met for older people living in suburban or rural areas.
28

A 2003 Brookings Institution report (Rosenbloom, 2003) indicates that those who are

unable to drive are often unable to use public transit services as well. The author

determined that older Americans are likely to give up walking before they cease driving,

further evidence that they would be unable to use public transportation. Since the average

man will outlive his driving ability by 6 years, and the average women by 10 years, this

can result in a substantial amount of time without viable transportation options (Foley et

al., 2002). Even though some older people can sometimes use special transit services,

most prefer to ride in a car with a friend or family member.

Special transit services typically have limited availability. They operate only

during regular transit-service hours, and there are residential distance requirements (e.g.,

within three quarters of a mile of a regular transportation route) for one to be considered

for services. The Brookings Institution report (Rosenbloom, 2003) found that many who 

did live near existing bus routes were still ineligible for services due to the eligibility

requirements of the service provider.

Finally, the Brookings Institution report (Rosenbloom, 2003) concluded that

although most communities host small, specialized paratransit services operated by

nongovernmental agencies, these usually serve only a very small proportion of the elderly 

population, and will serve a smaller proportion as the older population grows. They will

likely not be a viable strategy for addressing the community mobility needs of older

individuals with dementia.

The Community Mobility Needs of the Person with Dementia: Specialized Needs

of a Vulnerable Population

Individuals with dementia are often unable to use public transportations systems

if they are no longer able to drive safely (Rosenbloom, 2003). Those who become lost,

easily confused, or cannot reason through complex situations while driving are usually 

unable to navigate public transportation systems that involve reading maps and schedules

and understanding transit routes.

Little is known about what would make it possible for the individual with 

dementia to use public transportation. Studies to evaluate public transportation use by 

people with dementia have not yet been done (O’Neill and Dobbs, 2004). According to a

case study carried out by Adler and colleagues (2000), transportation for those with 

dementia must involve as little waiting as possible, as well as hours and routes with few

restrictions. Public transportation, however, offers none of these features. Applying the

concepts of travel training and mobility management, such as is done for individuals with 

certain disabilities, might be a useful strategy for people with dementia, particularly those

in the early stages of the disease process.
29

IMPLICATIONS FOR PROGRAM AND POLICY

A goal for all people, including people with dementia, is to maintain their

community mobility. A starting point for thinking about policy related to community

mobility and dementia is to consider the policy framework for older adults crafted by the

United States Department of Transportation (2003). That framework includes:

• New roadway designs that better accommodate the needs and limitations of older

drivers and pedestrians, along with land use that minimizes auto dependence and

facilitates aging in place.

• Vehicle safety systems designed to protect fragile older occupants, better

understanding of the interaction between older drivers and vehicle systems, and

use of new technologies to meet the needs of older drivers and passengers.

• Better understanding of factors that place older drivers at increased risk; more

effective procedures for identifying, assessing, training, rehabilitating, and 

regulating functionally limited drivers; better understanding of how to enable

people with functional disabilities to walk safely (see Dunbar, 2000).

• Public transportation systems that facilitate wider use by older people, including

one-call-does-it-all mobility managers; evaluation and promulgation of best

practices; elimination of programmatic barriers to coordinated delivery of

transportation services; and intercity travel that is more elder-friendly.

• Formation of State and local action plans to develop safe transportation for an

aging populace.

• A comprehensive campaign to educate older people and their caregivers on how to 

identify unsafe older drivers; information for community service groups to equip 

them to address the safe-transportation needs of older people.

• Research on the effects that loss of mobility can have on the quality of life of

older people, on the potential for related health-care costs, and on ways to reduce

the transportation problems of older people through technological and other

solutions.

Action steps are delineated for each of these items in the US DOT (2003) report

and in Eberhard (2004). However, steps related specifically to people with dementia have

not yet been identified. That is clearly an area where leadership is needed among

Alzheimer’s professionals, advocates and other concerned citizens. The first step is to 

acknowledge that while a diagnosis of dementia does not mean that the individual must

immediately stop driving, it does mean that the person will need to stop driving before

long, and that plans should be in place when that time comes.
30

Below are gaps and barriers to an effective transportation and community mobility

approach that will help people with dementia to remain in their communities for as long

as possible. The list is not exhaustive, however it addresses some of the most crucial

elements of transportation for people with dementia.

Current Policy Gaps: The Community Mobility Needs of Individuals with

Dementia

Public Transportation

In many areas, public transportation, including paratransit, is not a viable option 

for individuals with dementia, particularly because independent travel is not feasible for

them. Half of all older adults cannot use public transportation because it does not exist in 

their communities (Bailey, 2004). Public transportation depends on Federal, State, and

local government funding to operate. Maintaining the current public transportation 

system requires $14.8 billion in capital investments annually, while improvement would 

most likely require close to $43 billion annually (Bailey, 2004). It is hoped that planned

coordination within the United We Ride initiative will result in savings that will help 

curtail these rising costs.

Screening and Assessment

One set of elements for determining driving risk is screening and assessment.

Screening can be described as the detection of a possible problem; assessment determines

the extent and likely causes of the problem. While regular screening and driving

assessment are important for the safety of both the general public and the individual

driver with dementia, these activities can place a large financial burden on the patient and 

family (on top of the emotional burden they are likely to be experiencing). While most

driver evaluation programs offer full assessment and screening procedures, the cost of

such assessment is usually about $300 (Wang et al., 2003), and many insurance providers

will not cover these evaluations (Hunt, 2003). Moreover, such assessments are intended 

to be conducted multiple times for people with degenerative diseases such as dementia.
31

Licensing Policy Proposals Affecting Individuals with Dementia 

Currently, 51 separate assessment procedures are in place across the nation to 

determine fitness to drive. Increasingly, licensing agencies and stakeholder groups are

calling for a more uniform system of driver evaluation (Lococo and Staplin, 2005a). A

uniform system would include consistent reporting and licensing criteria for drivers with 

certain medical conditions, thereby reducing abuse of the system (such as drivers

obtaining a license in a State with less stringent policies and using it in a stricter State.).

Such a system would also promote communication between licensing agencies and

support services and help to reduce confusion about who should be referred for help 

(Bener, 2005). Recommended elements of a national assessment system include detailed

physician reports with a complete patient medical history, a battery of cognitive tests, a

driver interview with a trained evaluator, an on-road assessment, and finally evaluation by

the local Medical Advisory Board of cases that cannot be determined through cognitive

tests or driver evaluations (Lococo and Staplin, 2005a).

Dementia-specific licensing procedures have also been proposed. There is some

controversy regarding the idea of a graduated de-licensing system for those with 

degenerative diseases (Fain, 2003; Fitten, 2003). Such a program would not revoke

licensing privileges all at once but instead would gradually restrict driving privileges. For

example, geographically restrictive licenses allow individuals with dementia to drive only 

in familiar areas near their homes. Driving tests would be conducted in this area to verify

their safety (Lococo and Staplin, 2005a). Many who work with people with dementia,

however, have expressed concern about these kinds of proposals. Individuals with 

dementia can become lost even in areas with which they are familiar, and they may have

difficulty with unexpected driving situations, such as detours or road construction (Hunt,

2003; Silverstein, Flaherty, and Tobin, 2002).

Proposed Initiatives Beneficial to Individuals with Dementia

While nondrivers in the early stages of dementia may find it possible to use other

forms of transportation, the loss of cognitive abilities that results in unsafe driving also 

commonly makes it difficult for the affected individual to use public transportation. The

individual with dementia usually needs door-through-door services that place an escort at

each end of the trip. These options are quite costly, however. In most services, for

example, the cost of driver salaries can be as much as 50 percent of the total program

budget (Kerschner, 2005). Therefore, many stakeholders now look to volunteer programs

to provide transportation for this group of special-needs individuals. The success of such 

programs depends on resolving insurance liability concerns for volunteer drivers and 

securing insurance at reasonable costs, providing effective volunteer management, raising

funds to cover operational costs and driver reimbursement, and volunteer recognition

(Kerschner, 2005). Notwithstanding such challenges, many communities throughout the

country already use volunteer programs to aid in older people’s mobility (Beverly 

Foundation, 2001b).
32

The Benefits of Mobility Managers

Because older adults, and especially those with dementia, typically require a

combination of public and private modes to meet all their transportation requirements,

there is a growing need for local specialists knowledgeable about the network of services

offered in their area. During forums and focus groups conducted for the 2003 Department

of Transportation older person mobility report, the request was made frequently for a

central source of help with transportation planning. This sort of service, well known in

the disability network, would be invaluable to caregivers of individuals with dementia, as

it would eliminate a vast amount of planning on their part (U.S. Department of

Transportation, 2003). The Elder Care Locator service available through Area Agencies on 

Aging could potentially provide information about and referrals to local travel trainers and

mobility managers.

In addition to planning daily trips, mobility managers could also be a referral

resource for physicians and the Department of Motor Vehicles for people who have lost

their ability to drive (Cutler, 2005). These mobility managers could possibly help create a

mobility plan, not unlike a financial, legal, or end-of-life plan, that would help the

individual with dementia make the transition to being a nondriver. Some research suggests

that a formal mobility plan can ease the emotional distress of the individual during the

process of driving cessation (Bauer and Rottunda, 2003) while providing caregivers with 

resources before the actual driving cessation. Liddle, McKenna, and Broome (2004)

concur and note from their own work in Australia that a range of resources is needed to 

improve awareness of and planning for driving cessation, to provide support and 

education during the transition, and to maintain safety and lifestyle following retirement

from driving.

Barriers to Improving Mobility: The Effects of Current Regulations

Volunteer Liability

Currently, many regulations are in place that can make it difficult for nonprofit

organizations to use volunteers in providing transportation to vulnerable populations. In 

2005, Helen Kerschner of the Beverly Foundation presented information regarding some

of these restrictions at a White House Conference on Aging listening session (Kerschner,

2005). Kerschner noted that liability in the event of a crash is a major perceived problem

facing volunteer drivers, and some are not able to purchase insurance for use in their

volunteer capacity. Nonprofit organizations that rely on volunteer drivers often pay large

fees to insure their drivers, resulting in increased costs to clients. In response, Kerschner

made two policy recommendations: first, to implement a national policy extending the

Good Samaritan law so that it limits liability to volunteers who give rides to seniors and,

second, to encourage the insurance industry to cover programs and volunteer drivers who 

provide senior-friendly transportation.
33

Physician Liability

Physicians are concerned about liability at many points during the process of

driver evaluation. Some States do not protect physicians who report potentially 

dangerous drivers to their State Department of Motor Vehicles (National Older Driver

Research and Training Center, 2003). Such gaps in protection make it possible for the

patient who was reported to sue the physician for revealing confidential information,

despite the fact that it was done in the best interest of the patient and of the public’s

safety. In addition, some physicians are reluctant to discuss driving issues with patients

because they do not want to be held liable for the patient’s subsequent actions. In the

event of a crash the physicians fear being held liable because they had failed to keep the

driver off the road. These issues impair the ability of physicians to help potentially 

unsafe drivers receive evaluations.

Policy Summary

Addressing the policy gaps and barriers surrounding the transportation and 

mobility needs of people with dementia will be a long-term effort. As future research and

pilot projects explore the issues noted throughout this document, decision-makers will

have greater knowledge to affect change and to assure that people with dementia are able

to maintain safe mobility while preserving their dignity and quality of life. The

framework for action found in the vision laid out for a future transportation system in the

document, Safe Mobility for a Maturing Society: Challenges and Opportunities

(USDOT, 2003) will certainly benefit persons with dementia as well. Clearly, the general

strategy steps need to be taken before the specialized needs can be addressed. Getting 

people talking together from federal agencies, Congress, states, counties, municipalities,

health and social service agencies, and the private sector is a necessary strategy for the

sustainable community interventions needed to address the mobility needs of this

vulnerable population.
34

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APPENDICES

Appendix A

15 Key Federal Programs for Transportation Aid

The U.S. General Accounting Office has identified 15 key Federal programs that aid in the

transportation of disadvantaged older adults:

1. Independent Living Services for Older Individuals Who Are Blind: provide

transportation to programs and services and for general needs to blind people 55

and older.

2. Community Services Block Grant Programs: provide general trips to lowincome people via taxi vouchers and bus tickets.

3. Social Services Block Grants: provide trips to medical or social services to 

populations identified by the States as being in need.

4. Grants for Supportive Services and Senior Centers: provide trips for older

adults to program services and medical appointments, as well as general trips,

through contact with local service providers or via their own vehicles.

5. Program for American Indian, Alaskan Native, and Native Hawaiian Elders:

provides the specified populations with access to program services, medical

services, and general trips with the programs purchasing their own vehicles.

6. Medicaid: provides people eligible for Medicaid services with transportation to 

medical appointments, usually through reimbursement to transportation 

providers.

7. Rural Health Care Services Outreach Program: gives medically underserved

populations transportation to health-care services through transit passes and 

program vehicles.

8. Senior Community Services Employment Program: helps low-income seniors

access employment opportunities through reimbursement for transportation.
46

9. Capital and Training Assistance Program for Over-the-Road Bus

Accessibility: facilitates general trips for people with disabilities by purchasing

lift equipment and providing driver training.

10. Capital Assistance Program for Elderly Persons and Persons with

Disabilities: provides assistance with general trips by purchasing vehicles and

contracting for services with existing providers.

11. Capital Investment Grants: provide funds for programs for the general public to 

take general trips by giving to bus and bus-related capital projects.

12. Job Access and Reverse Commute: provides low-income people with 

transportation to employment by expanding existing services or establishing new

ones.

13. Nonurbanized Area Formula Program: provides the general public with general

trips through capital and operating assistance for existing programs.

14. Urbanized Area Formula Program: provides the general public with general

trips through capital and operating assistance for existing programs.

15. Veterans Medical Care Benefits: provides low-income or disabled veterans

with access to healthcare services through mileage reimbursement or via contracts

with service providers.
47

Appendix B

* The 5 A’s of Senior Transportation were developed by the Beverly Foundation, 2001

The 5 A’s of Senior Friendly Transportation

Availability: Transportation exists and is available when needed (e.g.,

transportation is at hand, evenings and/or weekends).

Accessibility: Transportation can be reached and used (e.g., bus stairs

can be negotiated; bus seats high enough; van comes to

the door; bus stop is reachable).

Acceptability: Deals with standards relating to conditions such as

cleanliness (e.g., the bus is not dirty); safety (e.g., bus

stops are located in safe areas); and user-friendliness (e.g.,

transit operators are courteous and helpful).

Affordability: Deals with costs (e.g., fees are affordable; fees are

comparable to or less than driving a car; vouchers or

coupons help defray out-of-pocket expenses).

Adaptability: Transportation can be modified or adjusted to meet

special needs (e.g., wheelchair can be accommodated; trip

chaining is possible).
DOT HS 810 684

November 2006