Driving often becomes more risky and dangerous for someone with Alzheimer’s disease (or another type of dementia) as the disease progresses. Having said that, driving (and stopping driving) is still one of the activities that cause the most controversy and frustration between people with dementia and their families.
Losing the ability to drive represents a loss of independence and control, as people with dementia are no longer able to move around independently and control the course of their day. However, while respecting dignity and independence is important, it is not as important as the safety of both the person with dementia and others around them.
Driving is an activity that is often taken for granted in terms of its complexity. A driver must be able to multitask and do the following things all at once:
Caregivers should consider the following warning signs that their loved one may no longer be able to drive safely and responsibly:
The laws about driving with a diagnosis of Alzheimer’s or other form of dementia vary by state and are unclear at best. In some states such as California, doctors are required to notify the Department of Motor Vehicles (DMV) if a person has been diagnosed with dementia. In other states, there is no such requirement. Once notified, different state DMVs respond differently. Some states automatically revoke a driver’s license, other states require an evaluation, still other state do nothing at all.
One might check with their state’s DMV. However, even if one can legally drive with a dementia diagnosis, it is simply a matter of time before their condition progresses and it becomes unsafe to do so. It is recommended that family members open a discussion about driving soon after a diagnosis is confirmed as this will become an issue and the sooner it is addressed, the easier it will be for a family to overcome these challenges.
Separate from the DMV, many insurance companies require that they be informed if the driver suffers from any condition that might affect his or her driving ability. Sometimes claims can be held up if this information is not provided, so caregivers should inform the insurance company as soon as possible about their loved one’s diagnosis of dementia and ask how this might affect coverage.
If dementia is diagnosed early enough that your loved one is still able to make informed decisions, talk with him/her about when, and in what case, he/she would like to be stopped from driving.
Inform the Insurance Company
Many insurance companies require that they be informed if the driver suffers from any condition that might affect his/her driving ability. Sometimes claims are held up if this information is not provided. Therefore, it is crucial caregivers inform the insurance company as soon as possible about their loved one’s diagnosis of dementia. Make sure to ask how coverage might be affected.
Make a Decision
If you feel that your loved one is no longer able to safely drive, first try honestly discussing your concerns with him/her. If necessary, include other family members in the discussion for extra support. Some caregivers find that recommendations from the family doctor or attorney, or an independent driving assessment, can provide authority if a loved one resists intervention. If all else fails, put his/her car keys in a place where they are inaccessible or get rid of their car altogether.
Consider Transportation Options
When your loved one is no longer able to drive him/herself, consider ways in which she/he can still remain mobile. In the earlier stages of dementia, buses and taxis may be appropriate, but someone should be available to send off and receive the individual if needed. Community transportation services can also provide a means of accessing senior centers and other resources, and adult day care centers may provide transportation to and from the facility. Additionally, try to limit the reasons your loved one needs to travel outside of the home for chores and appointments. For instance, have groceries, medications, or other goods delivered to the home or arrange for friends, family, or neighbors to drive him/her to doctor appointments.
There are several transportation options for non-driving persons with dementia. Depending on one’s stage of dementia, some options are not appropriate for all persons with the disease. When considering transportation options, think about the accessibility of the various options. For instance, if your loved one easily gets confused and disoriented, public transportation is not a good option. It’s also important to consider the cost of transportation and what you and your loved one can afford. Taxis can be quite expensive, and on the opposite end of the spectrum, some volunteer driver programs don’t charge for the service. Also, consider how much assistance your love one requires. Does he/she require someone to provide assistance door-to-door? Does he/she need to be reminded of where he/she is going and why? Is he/she able to schedule rides and pay for transportation?
Upon diagnosis of dementia and/or the early stages of dementia, persons often require little assistance and can often take public transportation. These options might include buses, trolleys, trains, shuttles, and light rail transit. If your loved one easily gets confused, forgets where he/she is headed, or is otherwise forgetful, public transportation is not a good option for him/her. In addition, this option may not be ideal for those who have never used public transportation, as figuring out the schedules and routes may be too overwhelming.
Paratransit services are a type of shared ride public transportation, but are specifically for elderly and disabled individuals, as well as those suffering from dementia. Depending on one’s area, paratransit services may offer a fixed route (at specified bus stops at set times) or door-to-door service. Rides must be booked in advance for door-to-door paratransit services. Depending on one’s stage of dementia, and whether fixed route or door-to-door services are available, this type of transportation may be suitable for persons with early to middle stage dementia. However, persons in late stage dementia would likely require too much assistance for a shared ride transportation system. Generally, this type of transportation charges about the same as regular public transportation, although in some cases, the charge may be double.
To find transit services in your state and area, check out the American Public Transportation Association website.
Another alternative to persons with dementia driving oneself is private transportation. This option is good for persons in early to middle stage dementia. However, if the individual has a tendency to exhibit problematic behaviors, such as aggressiveness, wandering, and mood swings, this type of transportation is not suitable. Examples of private transportation include taxis, Uber, and Gogograndparent.
Uber is a location-based app that is utilized from a smartphone, sending a private driver to an individual’s location. Gogograndparent allows a way for persons who do not own smartphones to still use Uber or Lyft. While there is no phone number to call to schedule a ride with uber, there is a number to call to schedule a ride through Gogograndparent. In other words, Gogograndparent is the “middle man” between a customer and the ride-share company.
Generally, friends and family are willing to provide transportation assistance for a loved one with dementia. Often times, people want to help, but are not always sure how to do so. If friends and family don’t ask how they can be of assistance, or don’t volunteer to provide transportation, ask them. Transportation might consist of taking the individual with dementia for a doctor’s appointment, running errands, or going to a local park for a social outing. This option of transportation for persons with dementia is a good one for those in all stages of dementia (early, middle, and late). The friend or family driver can provide supervision, remind the persons with dementia where and why they are going, and can provide assistance from door to door.
Volunteer driver programs are extremely instrumental in providing transportation for seniors, disabled persons, and individuals with middle to late stage dementia. In most cases, transportation is modified to meet the needs of the rider. For instance, assistance may be provided to and from one’s door, at one’s destination, and one’s volunteer driver might carry items for the rider. In addition, multiple stops may be made. Some volunteer driver programs educate their drivers as to the needs of persons with dementia. Some of these programs provide rides free of charge, while others ask for a suggested donation of $5 – $10 per ride. Please note, volunteer transportation programs vary in what is offered and how they operate. Therefore, all programs do not offer the same services. One may contact their local Area Agency on Aging office to enquire about volunteer driver programs. In addition, one can find volunteer driver programs in their area on the National Center for Mobility Management website.
Medicaid offers a number of assistance programs for low-income seniors and disabled persons, including those with dementia, and many of which offer transportation assistance. That said, it’s important to note that these programs are not consistent across states, and even within a state, there are a variety of Medicaid programs. Generally, assistance with transportation is offered via Home and Community Based Services (HCBS) Medicaid Waivers. Depending on the state and the program, both medical and non-medical transportation may be available. To find out more about Medicaid and if your loved one might qualify, contact the Medicaid office in your state.