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.
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.
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.
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).
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).
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.