Alzheimer's, Dementia, and Driving
The following information is mainly copied from a very excellent original by The Hartford Financial Services Group that they researched and wrote about 12 years ago. Not much has changed since then. Adult children still worry about their aging parents just like they always have. Included in this synopsis are links to the Utah Drivers License division where you can look up what Utah says about aging drivers and driving.
Why Driving and Dementia is a Difficult Issue
Driving represents independence, competence and control. It's a way to access healthcare, buy necessities, be productive and stay connected to family, friends and the community. Concerns about driving often surface during the early stages of dementia when individuals are still independent and able to manage daily activities.
This disease is not like other changes in later life that affect driving, such as eyesight problems and slow reaction times. Many older adults who don't have dementia can assess their driving without family intervention and make gradual changes to the way they drive. And most are able to continue driving safely throughout their lives.
However, it's different for those with Alzheimer's Disease and other dementias. The progression of this disease is usually gradual and somewhat unpredictable. It affects cognitive functions critical to driving, such as judgement, reaction time and problem-solving abilities. It can also cause physical and sensory problems that increase driving risk.
With dementia, an individual's capacity to assess his or her driving abilities may also diminish. People with dementia are especially likely to minimize the complexity of driving and overestimate their abilities. They may make excuses for their high-risk driving. Some common reasons that people with dementia use to justify their continued driving include:
"Just because I got lost doesn't mean I can't drive."
"I make sure I look where I'm going."
"I've driven many, many years and haven't had an accident."
As driving and assessment skills decline, the risk of serious loss or injury increases. Caregivers must start to assume the responsibility for monitoring and regulating the driving of the person with dementia.
Assessing Your Concerns About Their Driving Behavior
Many caregivers report that they have allowed a family member with dementia to continue driving after they believed it was unsafe. At the other extreme, some family members overreact to common driving errors such as failure to complete a stop at a stop sign. They may blame these errors on the disease when the person may have exhibited this bad habit long before dementia. A single occurrence of poor driving usually is not cause to stop driving. It does, however, signal the need for increased monitoring.
These activities can help caregivers assess their concerns about the driving skills of the person with dementia:
- Create opportunities to observe the person with mild dementia while driving.
- Keep a written record of observed driving behaviors over time.
- Share observations of unsafe driving with the person with dementia, other family members and healthcare providers.
Monitoring Driving Behavior
A diagnosis of Alzheimer's Disease or another kind of dementia is not automatically a reason to take away driving privileges. Families must determine when a person's attention span, distance perception or ability to process information makes it difficult for him or her to respond safely in driving situations.
Early warning signs of driving problems include:
- Incorrect signaling.
- Trouble navigating turns.
- Moving into a wrong lane.
- Confusion at exits.
- Parking inappropriately.
- Hitting curbs.
- Driving at inappropriate speeds.
- Delayed responses to unexpected situations.
- Not anticipating dangerous situations.
- Increased agitation or irritation when driving.
- Mysterious scrapes or dents on car, garage or mailbox.
- Getting lost in familiar places
- Near misses.
- Ticketed moving violations or warnings.
- Car accident.
- Confusing brake and gas pedals.
- Stopping in traffic for no apparent reason.
Most families restrict driving after an accumulation of warning signs. Therefore, family members must frequently observe driving behaviors over time. Share your observations with the person with dementia, other family members and health care providers. Families need to consider the circumstances and seriousness of unsafe driving practices before choosing the next steps, which are to simply continue the monitoring, modify the loved ones driving, or stop their driving immediately.
Easing the Transition from Driver to Passenger
The most effective approach to limit or stop driving involves progressive steps and a combination of strategies that fit the family’s circumstances, resources and relationships. For people in the early stages of dementia, driving is best reduced over time rather than all at once. Families can help by finding ways to let others drive or reduce the need to drive. Caregivers and families should be sure to address the important social needs of the person with dementia that were met through driving. When possible, include the person with dementia when planning ahead to limit driving.
Fortunately, in many cases, people with dementia begin limiting where and when they drive. The following signs indicate that a person with dementia is modifying his or her own driving behavior:
- Driving shorter distances.
- Driving on familiar roads.
- Avoiding difficult unprotected left-hand turns.
- Avoiding driving at night, in heavy traffic, on heavily traveled roads or during bad weather.
Let Others Do the Driving
Some people with dementia are better able to adjust to not driving if others gradually assume more of the driving responsibilities.
Friends and Relatives
Friends, neighbors, relatives or caregivers can offer to drive the person with dementia to appointments or other social events. Other family members will be more likely to assist with the driving if caregivers make specific requests and schedule appointments at times that work for those requested to help.
Reduce the Need to Drive
Resolving the driving issue involves not only substituting other drivers or modes of transportation, but also addressing the reasons people want to go places. Caregivers can look for ways that others can help meet the physical needs of the person with dementia, such as:
- Arrange to have prescription medicines, groceries and meals delivered, reducing the need to go shopping.
- Have hairdressers make home visits.
- Schedule people to visit regularly, either as volunteers or for pay.
- Arrange for friends to take the person with mild dementia on errands or to social or religious events.
Balancing the Social Needs
While caregivers consider ways to reduce the need to drive, it’s very important to remember the social benefits the person with dementia derives from interacting with others.
If caregivers consider the social needs that were met through driving, the transition to not driving will be more successful.
The following questions can help families and caregivers identify the social needs and develop ways to address them to ease the transition to not driving.
- Where does the person with dementia normally go? When and how often (e.g., grocery store, barbershop, appointments, library or religious activities)?
- What services can be brought to the home (e.g., groceries delivered or in-home barber)?
- Who can offer to provide transportation (e.g., neighbors running errands, relatives for doctors’ appointments or a friend going to religious services)?
- Can visits from family or friends include outings (e.g., eating out or going to a park)?
Take the Keys as a Last Resort
Taking away the car keys or a driver’s license, or selling or disabling the car should be a last resort. To the family member in the early stages of the disease, such actions seem extreme, disrespectful and punitive. And people with mild dementia can ignore, undo or maneuver around those strategies by driving without a license, enabling the disabled car or buying a new car to replace one that was sold. As one person with dementia noted, "If they disabled my car, I would call someone to fix it."
Once a person has stopped driving, caregivers must decide whether taking away the keys, license and car will help the person adjust or make it more difficult. Some caregivers remove the keys or the car from sight to avoid having the driving issue resurface. Others allow people to keep their keys, car and license to help them maintain a sense of dignity. Some people with dementia stop driving but carry their license as photo identification.
Seeking Help From Outside Sources
Caregivers often achieve better results by seeking support from professionals outside the family.
Healthcare professionals may be more likely to discuss driving issues with a patient if a caregiver has met with him or her privately and shared observations of driving behavior. This input can help because physicians do not have tests to determine definitively when a person in the early stages of dementia should not drive. And some doctors may hesitate to bring up a topic as emotionally charged as not driving for fear of jeopardizing their relationship with a patient.
Doctors may request that a patient not drive for a period of time while trying new medication that may produce drowsiness. When a physician is concerned about someone’s driving safety, writing a prescription to stop driving may give added weight.
Independent Driving Evaluations
These assessments may be available through rehabilitation programs. The Utah Department of Public Safety has some good information on their website and even a Driver Review Form you can fill out asking for a review. Driving tests are not uniform, and the evaluations vary depending on the extent of the tests and the evaluators’ familiarity with cognitive impairments and other conditions that affect driving. Nevertheless, such tests may provide families additional input and support. Home Healthcare professionals may know how to arrange for an independent driving evaluation.
Other Sources of Support
Lawyers, financial planners and care managers may be in a position to raise questions about driving safety. Caregivers can enlist their assistance by asking them to mention the subject as part of planning. Alzheimer’s support groups offer opportunities for caregivers and persons with dementia to share concerns and explore options.
Understanding How Family Relationships Affects the Decision
"There are six of us in the family – some still deny there is a problem, some tend to panic and the rest of us feel caught in the middle."
No two families dealing with dementia resolve transportation issues in the same way. Roles and relationships within families can affect decisions about when and how a person should stop driving.
Individual responses of family members may vary. For example, a caregiving spouse may try to protect the person with dementia by withholding information about driving incidents from adult children. An adult child may intervene on matters of safety, even though this might affect the relationship with the parent. One person may avoid confronting the driving concerns of the family member, while another may take charge of the situation and act without input from others.
Caregivers need to remember that family members follow long-established patterns for making decisions. It is unrealistic to think that patterns will change when handling a difficult issue like driving safety. Caregivers can work to minimize friction by listening to different opinions and appreciating what each person can contribute, even if it differs from their point of view.
Disagreements in families are often the result when individuals do not have the same opportunities to assess driving abilities. Having factual information about driving behavior does not guarantee families will reach consensus on when to limit driving. However, frequent, open communication about specific, observed behaviors and concerns may help to lessen differences. Everyone involved in caring for the person with dementia can help by focusing on the key issues – the self-respect of the person with dementia and the safety of everyone on the road.
Advice From Caregivers Who Have Been There
1. There is no easy answer; no right way.
Caregivers need to consider the personality and the abilities of the person with dementia when making decisions over the course of the disease. They must take into account the roles and relationships within the family that affect decisions and their outcomes. Each family must select strategies that will work within its unique situation.
2. Begin discussions and planning early and involve the person with dementia.
Ideally, a person with dementia should make the transition from driver to passenger over a period of time. Open, early and continual communication can help the person with dementia and the family to agree on a course of action before a crisis occurs.
3. Base decisions on driving behavior observed over a period of time.
Regular monitoring and assessing of driving helps caregivers respond appropriately. A diagnosis alone may not be sufficient reason for a person to stop driving. However, when it clearly is no longer safe for a person to drive, caregivers must not delay in taking necessary steps. In hindsight, many caregivers regret permitting a loved one to drive longer than it was safe. The result was prolonged anxiety for caregivers and placing others at risk.
4. Get support when making and implementing decisions about driving.
It is not healthy for the caregiver, the person with dementia or the family as whole, when one person shoulders all of the responsibility for making and implementing decisions about driving and dementia. Caregivers can make reasonable requests of family members and those outside the family. Neighbors, friends and relatives can contribute by providing for the emotional, social and transportation needs of the person with dementia.
Doctors, lawyers, care managers, financial planners and local Alzheimer’s support groups offer information, guidance and perspective. People in authority outside the family can reinforce the family’s efforts to ensure the safety and dignity of a person with dementia. The more people who are asked to help, the less any one person has to do and the greater the likelihood that the person with dementia will get the best support.
HOME SAFETY FOR PEOPLE WITH ALZHEIMER’S DISEASE
Is it safe to leave the person with Alzheimer’s disease alone?
It will be necessary to evaluate this issue often throughout the course of the disease.
Does the person with Alzheimer’s disease…
- Display confused and unpredictable behavior under stress?
- Recognize dangerous situations such as fire?
- Know how to use a telephone when necessary? Knows their address and phone number?
- Know how to get help? Can they dial 911? Use a personal emergency response system?
- Become restless or show signs of agitation or depression if left in the home alone?
- Wander and become disoriented throughout the day or in the evening?
- Attempt to do activities that may need supervision such as cooking, repair, woodwork?
Make sure that all areas which are accessible to the person with Alzheimer’s disease are safe and dangerous areas are difficult to access:
- Lock up cleaning supplies with childproof latches on storage cabinets and drawers.
- Turn off electricity to the garbage disposal. People with Alzheimer’s may put in unwanted objects or even their hands. Place a drain trap over drains so unwanted items will not be washed down the drains.
- Hide knives, scissors, blades and other utensils that may be sharp or dangerous.
- Put away the toaster, blender and any small appliances that may be difficult or dangerous to use.
- Unplug larger appliances such as the microwave if not safe to use unsupervised.
- Remove knobs from the stove or have a switch installed to turn stove off or disable the stove completely.
- Keep a fire extinguisher nearby. Do not store flammable liquids, matches or lighters in the kitchen.
- Clean out refrigerator regularly. People with Alzheimer’s do not know if food is fresh or spoiled.
- Remove all artificial fruit and vegetables or food shaped magnets because they may appear to be edible.
- Remove throw rugs to avoid tripping.
- Set water temperature at 115-120 degrees to avoid scalding.
- Install grab bars in contrasting color (or cover with colorful tape) in tub/shower and beside toilet. Use an elevated toilet seat. Use plastic shower stool and hand-held showerhead to make bathing easier.
- Apply textured decals on slippery surfaces. Remove area rugs and replace with washable wall-to-wall carpeting to avoid slipping.
- Supervise the use of hairdryers, electric and hand razors and curling irons or if the person cannot use appliances even with supervision, cover electrical outlets and remove appliances from bathroom.
- Remove locks from the bathroom door. Do not leave a severely impaired person with Alzheimer’s disease alone in the bathroom.
- Discard dangerous items from the medicine chest. Store medications (prescription and nonprescription) in a locked cabinet. Supervise the taking of prescription and over-the-counter medications.
- Remove cleaning products from under the sink and lock away.
- Install night lights between bedroom and bathroom.
- Monitor the use of heating pads, which can cause burns. Keep controls out of reach. Avoid using electric blankets. Avoid space heaters and portable fans.
- Place bed against wall for increased security or place mattress on floor if necessary to prevent falls.
- Use an infant intercom to alert you to any noises to indicate need for help.
- Put away power tools such as drills, saws and other tools such as axes and picks. Limit access to large equipment such as lawnmower, edger and snow blower.
- Lock up poisonous products such as paints and fertilizers. Remove and lock up all fuel sources and fire starters for grills when not in use.
- Store care keys in a secure location not visible or accessible to the person.
- Lock up gates and fences… disguise outdoor locks or install deadbolts on gates. Prune bushes and foliage well away from walkways and doorways. Make sure outdoor lighting is adequate.
- Always supervise person in areas that are not enclosed.
- Keep steps textured to prevent falls when wet or icy. Keep handrails in good repair. Mark the edges of stairs with bright paint or reflective tape. A ramp to the home may be needed instead of using stairs. Eliminate all uneven surfaces and obstacles such as hoses, to prevent falls.
- Remove poisonous plants. Check with poison control if needed.
- Apply colored decals to large windows and sliding glass doors.
- Avoid clutter… it creates confusion and danger.
- Keep all alcohol locked in a cabinet. Drinking alcohol can create confusion and will interact with some medications.
- Stairways should have a handrail that extends beyond the first and last steps and be carpeted or have safety grips.
- Install smoke alarms near all bedrooms and check their function and batteries regularly.
- When caregiver is not home, use a telephone answering service or machine and turn phone down. The person with Alzheimer’s may not be able to take a message and may be a target for telephone exploitation by solicitors.
- Check out other links on the web such as this one from the Society of Certified Senior Advisors
STATISTICS ABOUT ALZHEIMER’S DISEASE
The impact of Alzheimer’s on individuals, families and our health care system makes the disease one of our nation’s greatest medical, social and fiscal challenges.
- An estimated 4.5 million Americans have Alzheimer’s disease, according to date based on the number of cases detected in an ethnically diverse population sample and the 2000 U.S. census. In Utah close to 40,000 people have been diagnosed with Alzheimer’s disease. Utah has one of the fastest growing elderly populations in the country, therefore the increase in Utahan’s with Alzheimer’s disease will be dramatic in the years to come if a treatment or cure is not found.
- The data shows that by 2050, the number of Americans with Alzheimer’s could range from 11.3 million to 16 million, with a middle estimate of 13.2 million. In Utah the number of people with Alzheimer’s disease will rise to almost 100,000 by the middle of the century.
- Finding a treatment that could delay onset by 5 years could reduce the number of individuals with Alzheimer’s disease by nearly 50 percent after 50 years.
- In a Gallup poll commissioned by the Alzheimer’s Association, 1 in 10 Americans said that they had a family member with Alzheimer’s and 1 in 3 knew someone with the disease.
- Increasing age is the greatest risk factor for Alzheimer’s. One in 10 individuals over 65 and nearly half of those over 85 are affected. Rare, inherited forms of Alzheimer’s disease can strike individuals as early as their 30’s and 40’s.
- A person with Alzheimer’s disease will live an average of 8 years and as many as 20 years or more from the onset of symptoms.
- National direct and indirect annual costs of caring for individuals with Alzheimer’s disease are at least $100 billion, according to estimates used by the Alzheimer’s Association and National Institute on Aging.
- Alzheimer’s disease costs American business $61 billion a year, according to a report commissioned by the Alzheimer’s Association. Of that figure, $24.6 billion covers Alzheimer health care and $36.5 billion covers costs related to caregivers of individuals with Alzheimer’s, including lost productivity, absenteeism and worker replacement.
- More than 7 out of 10 people with Alzheimer’s disease live at home, where almost 75 percent of their care is provided by family and friends. The remainder is “paid” care costing an average of $12,500 per year. Families pay almost all of that out of pocket.
- Half of all nursing home residents have Alzheimer’s disease or a related disorder. The average cost for nursing home care is $42,000 per year but can exceed $70,000 per year in some areas of the country.
- The average lifetime cost of care for an individual with Alzheimer’s is $174,000.
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FINDING OUT IF IT’S ALZHEIMER’S DISEASE
Memory loss that disrupts everyday life is not part of the normal aging process. It is a symptom of dementia, a gradual and progressive decline in memory, thinking, and reasoning skills. The most common cause of dementia is Alzheimer’s disease, a disorder that results in the loss of brain cells.
TEN WARNING SIGNS:
1. Memory loss that affects job skills. It’s normal to forget people’s names from time to time, but frequent forgetfulness is cause for concern.
2. Difficulty performing familiar tasks. Anyone can leave a button unbuttoned, but when someone becomes persistently challenged by buttons or other tasks of daily living most people take for granted, that’s cause for concern.
3. Language problems. From time to time, anyone can have difficulty finding the right word. But when simple words present problems, or when sentences become incomprehensible, that might signal Alzheimer’s disease.
4. Time and place disorientation. It’s normal to forget the date or a destination. People with Alzheimer’s often feel lost standing across the street from their own homes.
5. Loss of judgment. Anyone can fail to notice that an item of clothing is stained, but when someone dresses completely inappropriately -- wearing several shirts or mistaking underwear for a hat -- that’s cause for concern.
6. Problems with abstract thinking. Anyone can struggle over balancing a checkbook. People with Alzheimer’s forget what numbers are for and how to use them.
7. Misplacing things. Anyone can misplace a wallet or keys, but when someone puts a wallet in the refrigerator or keys in the sink, that’s cause for concern.
8. Changes in mood or behavior. Changing moods are a fact of life, but people with Alzheimer’s disease often exhibit rapid mood changes -- from calm to tears to rage -- for no apparent reason.
9. Changes in personality. People often become more ‘crotchety’ as they become elderly, but Alzheimer’s disease often makes people paranoid, very confuse and/or fearful.
10. Loss of initiative. It’s normal to get bored with daily activities, but when people lose much of their get-up-and-go, that’s cause for concern.
Memory loss and changes in mood and behavior are some signs that you or a family member may have Alzheimer’s disease. If you have notices these signs, it is important to receive a diagnosis. Other health problems can also cause dementia or a decline in intellectual ability severe enough to interfere with a person’s daily routine, such as: Stroke Head injury Poor nutrition Drug reactions Metabolic changes Depression Parkinson’s disease Huntington’s disease Pick’s disease Lewy’s body disease Brain tumors Hypothyroidism Vitamin B-12 deficiency Alzheimer’s disease is the most common cause of dementia. It is important to identify the actual cause in order for the individual to receive the proper care.
The individual who may have Alzheimer’s disease may be able to maximize the quality of his or her life by receiving an early diagnosis. It may also resolve the anxiety of wondering “What is wrong with me?” An early diagnosis allows more time to plan for the future. Decisions regarding care, living arrangements, financial and legal issues and other important issues can be addressed. Alzheimer’s disease is known to strike persons in their 40s and 50s. This rarer “early onset” form of Alzheimer’s disease presents unique planning issues for the individual and family.
There is no one diagnostic test that can detect if a person has Alzheimer’s disease. The diagnosis is made by reviewing a detailed history of the person and the results of several tests, including a complete physical and neurological examination, a psychiatric assessment and laboratory tests. Once these tests are completed, a diagnosis of “probable” Alzheimer’s disease can be made by process of elimination. However, physicians can be 80 to 90 percent certain their diagnosis is accurate. The process may be handled by a family physician or may involve a diagnostic team of medical professionals, including the primary physician, neurologist (a physician specializing in the nervous system), psychiatrist, psychologist and nurses.
Utah is fortunate enough to have the Center for Alzheimer’s Disease Care, Imaging and Research where neurologists and neuropsychologists specialize in the diagnosis and treatment of Alzheimer’s disease. They can be reached at: (801) 585-6387 for an appointment. A referral from your primary care physician will be needed