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.

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 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.

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