THE ROAD LESS TRAVELED - The Impact of Dementia on Independent Mobility

by Women's Brain Health Initiative:A highlight of the teenage years for many people is getting a driver’s licence. It represents freedom and independence. So, it’s no surprise that the thought of losing one’s licence - an inevitable reality for those with dementia - can be so distressing. Since driving cessation is such a sensitive topic, many caregivers are reluctant to bring it up to a loved one who has dementia. However, it is critical to have such discussions and ensure your loved one hangs up the keys before she/he, or anyone else, gets hurt.Driving is a complex activity that requires physical coordination, good judgement, and the ability to make quick decisions and stay focused in sometimes chaotic conditions. These are all skills that can be compromised, sometimes even in the early stages of dementia, dramatically affecting the risks of driving.“Studies have shown that the driver with dementia is at increased risk to cause traffic accidents,” reported Dr. Laura B. Brown and Dr. Brian R. Ott in their research paper, “Driving and Dementia: A Review of the Literature” published in the December 2004 issue of the Journal of Geriatric Psychiatry and Neurology. In fact, they stated that overall “there is probably a 2- to 8-fold greater risk of crashes for elderly drivers with mild to moderate dementia compared to those not demented.”They continue to say, however, that there is evidence to suggest “not all persons with dementia are incompetent drivers, particularly in the very early stages.”Everyone with dementia will eventually have to modify and then stop driving completely, but the challenge is figuring out when these changes should happen. The answer is different for each person because dementia affects every individual differently. Most experts agree that simply getting a diagnosis of dementia is not, on its own, reason enough to take away someone’s licence. Each person must be assessed individually on her or his competence to drive, and assessments must occur frequently because the disease progresses over time.Denial: Dementia’s Unique Impact on DrivingWith age, driving skills change for virtually everyone as vision and hearing fade, reaction time slows and mobility decreases (e.g., making it hard to turn your head and see behind you while you drive in reverse). Yet, for people with dementia, the challenges are even greater. The biggest difference is that people without dementia that experience the common changes that come with age will often realize their driving skills have been impaired and independently make changes to their driving behaviour to increase safety, e.g., avoiding driving at night, on the highway, or in poor weather.Dementia patients, however, frequently lack the capacity to understand what is happening to them and are likely to minimize the complexity of driving, overestimate their own abilities, and resist making any changes because they don’t think anything is wrong. In essence, they struggle with the combined impact of compromised driving skills plus impaired self-assessment skills, making it essential for others to intervene to ensure everyone’s safety. While health professionals or governmental departments responsible for licences may play a role in driving cessation, family members are often in the best position to watch for signs of decreased driving skill, bring any changes to the attention of professionals, and help the person with dementia transition out of driving.The Hartford Financial Services Group in Hartford CT offers a free educational guide called “At the Crossroads: Family Conversations About Alzheimer’s Disease, Dementia & Driving” that includes a comprehensive worksheet listing all of the warnings signs to look for, along with other helpful information and worksheets to assist people with dementia and their families in working their way through the driving cessation process. This free guide can be viewed online here. Assessing When It’s Time To Stop DrivingThe process of assessing when a person with dementia should stop driving often begins with a family conversation. The “At the Crossroads” guide recommends a relative who knows the person with dementia well be the one who initiates the conversation, and to do it as early as possible. Do not wait until the person has an accident or commits a traffic violation to raise the subject.Talking about it early will increase the chances that the person comprehends and remembers your discussion, and it’s the best time for exploring options together about gradually limiting and then eventually stopping driving.Be empathetic, appeal to their sense of responsibility, and offer to help them find new ways to get around.Frequent, short conversations are thought to be more effective than a single, long conversation. However, if the person is already showing significant impairment of driving abilities and safety is an urgent concern, one conversation may have to be enough. Be direct and firm while maintaining a calm, reasonable tone.The Canadian Automobile Association (CAA) and The American Automobile Association (AAA) have online resources to help older adults self-evaluate their driving skills. Both offer tools that may help in the preliminary assessment of skills but are not substitutes for an official driving evaluation. The results are intended to help older adults become aware of the potential impairments that may be affecting their safety behind the wheel, and to guide subsequent discussions with professionals who are qualified to conduct an official evaluation such as a doctor, occupational therapist, or driving rehabilitation specialist.CAA’s website includes a section with resources specifically for senior drivers (https://www.caa.ca/seniors/).  In the subsection on assessing your driving skills (https://www.caa.ca/seniors/assess-your-driving-skills/), there are two different options:(1) a form you download and complete in about 15 minutes; and(2) an interactive, online test that requires a partner to complete, and takes about 45 minutes.AAA has a section on their website dedicated to the subject of seniors and driving (http://seniordriving.aaa.com),including a link to an interactive, online driving evaluation (www.roadwiseonline.org). This free, confidential, self-evaluation takes 30 to 45 minutes to complete and assesses potential driving risks in eight key areas.Some individuals with dementia are more accepting of advice to restrict or stop driving if it comes from their doctor or a licensing official, so contacting one of these professionals may be the next step after a family conversation and/or online self-assessment. Doctors sometimes assess the patient about their competence to drive, but sometimes they will refer patients to other professionals, at either a public or private facility, for an in-depth driving assessment. These assessments vary from place to place, and might include a written test, driving simulation test and/or a road test. Your local Alzheimer’s Association can help you find a driving assessment program in your area.Helping With the TransitionWhen it’s clear that it is time for driving to stop completely, the Alzheimer’s Association suggests the following tips to help ease the transition:(1) acknowledge the loss;(2) arrange for alternative transportation;(3) solicit the support of others (e.g., physician, friends,relatives, insurance agent);(4) make the car less accessible;(5) require the patient to take a driving test; and(6) be firm.Warning SignsBelow is a list of some of the key signs to watch for indicating the dementia may be impacting driving to an extent that it is no longer safe. Consider the frequency and severity of the incidents you observe, and watch for patterns. Drastic action may not be necessary if incidents are isolated or minor.

• getting lost in familiar territory
• driving too slow or fast, or stopping for no reason
• riding the brake, or confusing the brake and gas pedals
• other drivers frequently honk their horns
• damage (i.e., scrapes or dents) on the car or garage
• difficulty with parking
• failing to notice/obey traffic signs or signals
• difficulty with turns, lane changes or highway exits
• incorrect signaling
• near misses or accidents

Some advanced dementia patients may not stop driving just because they are told they must, even if their licence is revoked. In cases like this, where the person with dementia does not understand what is happening or disagrees with it, you may have to take the keys away, disable the vehicle (e.g., by removing key engine parts), or remove/sell the vehicle. Such actions should only be taken as a last resort since the person with dementia will likely perceive them as extreme and disrespectful.Technology to Aid in a Safe Shift to WalkingDriving is not the only way to get around, and walking is a great option that offers more than just transportation. Walking also offers the benefits of exercise and fresh air. Since people with dementia often get disoriented or lost, caregivers can be reluctant to allow the person the freedom to head out on foot alone. GPS (global positioning systems) locating devices are beginning to change that.GPS devices for people with dementia vary and might be a phone-like device worn around the neck, or a lockable watch or even a shoe insole. The services provided will vary depending on the technology and may include:

1. real-time location that can be viewed on an online map;
2. geofencing (designation of a safe zone, and alerts sent to caregiver when person wearing device wanders outside of the boundaries);
3. two-way voice communication;
4. panic button for direct family contact; and
5. breadcrumb trail (showing the path the person is on—useful if the device loses battery power or enters a large building where the signal may be blocked).

Using a GPS device cannot guarantee that someone with dementia won’t get lost or can be found if they do, but it certainly can help significantly lower any risks of independent walking or wandering.GPS devices have worked well in pilot tests to help people with cognitive impairment maintain their ability to go out for walks independently, and as a tool to help keep people safe who have a tendency to wander.Alberta Health Services partnered with researchers at the University of Alberta to study the effectiveness of SafeTracks GPS devices to prevent people with cognitive impairments from getting lost. The Locator Device Project was a 12-month trial involving participants who were living in the community (i.e. not in a care facility), and were actively mobile outside of the home.Feedback was collected from the GPS users and their caregivers and revealed that the device provided independence to the person with cognitive impairment and peace of mind to the caregivers. It also revealed a high level of intention to use GPS devices beyond the end of the study period.A study of 200 people with dementia in Norway — part of the “Trygge Spor og Samspill” (safe tracking and interaction) public sector initiative — had each person use a GPS device when heading out. The research found that the use of GPS bypeople with dementia helped almost all participants achieve “an increased senseof security, freedom and quality of life.”This was true for both the people with dementia, their next of kin, and professional caregivers. (A very small number of participants did not feel so positively about the GPS technology and felt that they were “under surveillance.”) GPS devices were also found to offer the additional benefit of potential cost savings in cases where the technology allowed someone to live at home longer and where family caregivers were able to spend more time at work and less time directly supervising the person with dementia.Because of the progressive, degenerative nature of dementia, GPS devices won’t work as a tool to support independent mobility for the long-term. (The Norway study found the average period of use was between 10 and 11 months.) In the short-term, however, GPS technology holds much promise for allowing people with dementia who would rather go out than sit around inside, the freedom to live an active, independent life for as long as possible.Source: MIND OVER MATTER