Question: My brother-in-law is a retired physician.  The family is convinced he has some form of dementia, yet he refuses to see a doctor. He repeats himself, is forgetful, exercises poor judgment and frequently gets lost.   The problem is driving.  His family wants him to stop, but he refuses. They have turned to me for guidance. Any advice?

Answer: You and your family are faced with a very difficult situation.  Driving represents independence, freedom, competence and control.  Any one of these is difficult to lose.

Much of the information about dementia warns against driving, but doesn’t describe when or how a transition should occur.  The publication “At the Crossroads, A Guide to Alzheimer’s Disease, Dementia & Driving,” published by The Harford Financial Services Group Inc. and the MIT Age Lab, provides some guidance.  Much of the following information is from that publication, available online at thehartford.com/alzheimers.

Changes that occur with dementia are different from normal changes that occur with age.  For example, normal changes in eyesight and slower reaction time can affect driving skills of older adults.  These changes usually are gradual, allowing older adults to slowly modify the way they drive. For example, they may avoid night driving, driving on freeways during rush hour or driving long distances.

Older adults without dementia usually can assess and regulate their driving without any family intervention and continue to drive safely.

The situation is different for those with dementia. Alzheimer’s disease, a form of dementia, is gradual and unpredictable.  “It can affect cognitive functioning such as judgment, reaction time and the ability to solve problems,”  according to “At the Crossroads.”

People with dementia typically cannot assess their abilities – they often overstate them, while minimizing the complexity of driving.

Here are some comments that older adults with dementia have made to justify their continued driving:

“Just because I got lost doesn’t mean I can’t drive.”

“I make sure I look where I am going.”

“I’ve driven many years and haven’t had an accident yet.”

A diagnosis of dementia is not automatically a reason to remove driving privileges.

However, it is important to pay attention to early warning signs such as incorrect signaling, trouble navigating turns; moving into the wrong lane; confusion at exits; hitting curbs; difficulty parking; getting lost in familiar places; driving at inappropriate speeds; a car accident; confusing the brake and gas pedals; and stopping in traffic for no apparent reason.

The Hartford report suggests keeping a list of warning signs, the date observed and comments.  That’s your data which can lead to a plan. Finding a balance is important.

One extreme is family members allowing the individual to drive for months even though they believe it is unsafe.  The other extreme is family members overreacting to driving errors such as going through a stop sign, getting a fender bender or having difficulty parking.  The individual may have had bad driving habits long before suffering from dementia.

Incidents that occur just once or twice are no reason for the person to stop driving.  However, it may send a signal to observe and assess if they occur repeatedly. One goal is to help individuals with dementia limit or stop driving while preserving their dignity.

Those with mild dementia can use senior transportation services.  For transportation within Los Angeles County, contact ACCESS at 800-827-0829.   Rides of distances less than 20 miles cost $2.25 each way; over 20 miles costs $3.00 each way.

The Hartford publication offers a tool entitled “Agreement with My Family about Driving.”  The key sentences in the form are:  “I have discussed with my family my desire to drive as long as it is safe for me to do so.  When it is not reasonable for me to drive, I desire (person’s name) to tell me I can no longer drive.  I trust my family will take the necessary steps to prohibit my driving in order to ensure my safety and the safety of others while protecting my dignity.”  The individual signs and dates the form and indicates who else will receive a copy.

Unfortunately there is no single “recipe” for families to deal with the transportation issue.  Since each family member has a unique relationship with the individual, perceptions of the risks may differ. Even factual information about the driving behavior may elicit different opinions and advice.

Focusing on two key issues can help individuals reach a consensus:  the safety of everyone on the road and the dignity and self-respect of the individual with dementia.

Caregivers have some advice.  For the Hartford report they were asked: “If you could do it all over, what would you do differently?”  They answered with four principles that can help caregivers, family members and those with dementia make good decisions.

Know that answers are not easy and there is no right way:  Caregivers, who include family members, must acknowledge and understand the personality and abilities of the person with dementia.  A strategy must be selected that will work within one’s own unique family.

Plan early for a discussion and involve the individual with dementia:  Ideally, an individual would make the transition from being a driver to a passenger over a period of time.  The “Agreement with My Family About Driving” is a good starting point.  But again, this must be started at the onset of the disease.

Observe behavior over a period of time:  A diagnosis may not be the sufficient reason for a person to stop driving.  However, when it is clear that the individual can no long drive safely, caregivers should not delay in taking the necessary steps.  According to the report, many caregivers regret permitting a loved one to continue driving, posing risks to drivers, pedestrians and the individual.

Get support in making and implementing the decision about driving:  Care managers, doctors and Alzheimer’s support groups can provide information, guidance and a perspective.  Neighbors, friends and relatives can offer emotional support as well as helping with the transportation needs. The key is to ask for assistance.

One of the biggest challenges is to balance safety with the person’s desire to remain independent.

For more information about driving and older adults, go to the search box on H.E.L.P.’s Senior Truth Blog and type in “driving.” For more information and support contact the Alzheimer’s Association at 323-938-3379.

Note, taking away the keys is a last resort.  If all else fails, a family member can report the individual to the Department of Motor Vehicles.  The DMV would then require the individual to take a behind-the-wheel driving test.  The California DMV can be reached at 800-777-0133 or dmv.ca.gov.

National studies indicate that 93 percent of drivers who stop driving do so voluntarily.

Best wishes in your role as counselor and educator.  Hopefully the decisions that will be made will ensure safety, dignity and family harmony.

Copyright Helen Dennis 2010. All rights reserved.

Question: My brother-in-law is a retired physician.  The family is convinced he has some form of dementia, yet he refuses to see a doctor. He repeats himself, is forgetful, exercises poor judgment and frequently gets lost.   The problem is driving.  His family wants him to stop, but he refuses. They have turned to me for guidance. Any advice?

Answer: You and your family are faced with a very difficult situation.  Driving represents independence, freedom, competence and control.  Any one of these is difficult to lose.

Much of the information about dementia warns against driving, but doesn’t describe when or how a transition should occur.  The publication “At the Crossroads, A Guide to Alzheimer’s Disease, Dementia & Driving,” published by The Harford Financial Services Group Inc. and the MIT Age Lab, provides some guidance.  Much of the following information is from that publication, available online at thehartford.com/alzheimers.

Changes that occur with dementia are different from normal changes that occur with age.  For example, normal changes in eyesight and slower reaction time can affect driving skills of older adults.  These changes usually are gradual, allowing older adults to slowly modify the way they drive. For example, they may avoid night driving, driving on freeways during rush hour or driving long distances.

Older adults without dementia usually can assess and regulate their driving without any family intervention and continue to drive safely.

The situation is different for those with dementia. Alzheimer’s disease, a form of dementia, is gradual and unpredictable.  “It can affect cognitive functioning such as judgment, reaction time and the ability to solve problems,”  according to “At the Crossroads.”

People with dementia typically cannot assess their abilities – they often overstate them, while minimizing the complexity of driving.

Here are some comments that older adults with dementia have made to justify their continued driving:

“Just because I got lost doesn’t mean I can’t drive.”

“I make sure I look where I am going.”

“I’ve driven many years and haven’t had an accident yet.”

A diagnosis of dementia is not automatically a reason to remove driving privileges.

However, it is important to pay attention to early warning signs such as incorrect signaling, trouble navigating turns; moving into the wrong lane; confusion at exits; hitting curbs; difficulty parking; getting lost in familiar places; driving at inappropriate speeds; a car accident; confusing the brake and gas pedals; and stopping in traffic for no apparent reason.

The Hartford report suggests keeping a list of warning signs, the date observed and comments.  That’s your data which can lead to a plan. Finding a balance is important.

One extreme is family members allowing the individual to drive for months even though they believe it is unsafe.  The other extreme is family members overreacting to driving errors such as going through a stop sign, getting a fender bender or having difficulty parking.  The individual may have had bad driving habits long before suffering from dementia.

Incidents that occur just once or twice are no reason for the person to stop driving.  However, it may send a signal to observe and assess if they occur repeatedly. One goal is to help individuals with dementia limit or stop driving while preserving their dignity.

Those with mild dementia can use senior transportation services.  For transportation within Los Angeles County, contact ACCESS at 800-827-0829.   Rides of distances less than 20 miles cost $2.25 each way; over 20 miles costs $3.00 each way.

The Hartford publication offers a tool entitled “Agreement with My Family about Driving.”  The key sentences in the form are:  “I have discussed with my family my desire to drive as long as it is safe for me to do so.  When it is not reasonable for me to drive, I desire (person’s name) to tell me I can no longer drive.  I trust my family will take the necessary steps to prohibit my driving in order to ensure my safety and the safety of others while protecting my dignity.”  The individual signs and dates the form and indicates who else will receive a copy.

Unfortunately there is no single “recipe” for families to deal with the transportation issue.  Since each family member has a unique relationship with the individual, perceptions of the risks may differ. Even factual information about the driving behavior may elicit different opinions and advice.

Focusing on two key issues can help individuals reach a consensus:  the safety of everyone on the road and the dignity and self-respect of the individual with dementia.

Caregivers have some advice.  For the Hartford report they were asked: “If you could do it all over, what would you do differently?”  They answered with four principles that can help caregivers, family members and those with dementia make good decisions.

Know that answers are not easy and there is no right way:  Caregivers, who include family members, must acknowledge and understand the personality and abilities of the person with dementia.  A strategy must be selected that will work within one’s own unique family.

Plan early for a discussion and involve the individual with dementia:  Ideally, an individual would make the transition from being a driver to a passenger over a period of time.  The “Agreement with My Family About Driving” is a good starting point.  But again, this must be started at the onset of the disease.

Observe behavior over a period of time:  A diagnosis may not be the sufficient reason for a person to stop driving.  However, when it is clear that the individual can no long drive safely, caregivers should not delay in taking the necessary steps.  According to the report, many caregivers regret permitting a loved one to continue driving, posing risks to drivers, pedestrians and the individual.

Get support in making and implementing the decision about driving:  Care managers, doctors and Alzheimer’s support groups can provide information, guidance and a perspective.  Neighbors, friends and relatives can offer emotional support as well as helping with the transportation needs. The key is to ask for assistance.

One of the biggest challenges is to balance safety with the person’s desire to remain independent.

For more information about driving and older adults, go to the search box on H.E.L.P.’s Senior Truth Blog and type in “driving.” For more information and support contact the Alzheimer’s Association at 323-938-3379.

Note, taking away the keys is a last resort.  If all else fails, a family member can report the individual to the Department of Motor Vehicles.  The DMV would then require the individual to take a behind-the-wheel driving test.  The California DMV can be reached at 800-777-0133 or dmv.ca.gov.

National studies indicate that 93 percent of drivers who stop driving do so voluntarily.

Best wishes in your role as counselor and educator.  Hopefully the decisions that will be made will ensure safety, dignity and family harmony.

Copyright Helen Dennis 2010. All rights reserved.