This piece is from my column for the Providence Journal that was called Privacy Paranoia: Dementia and Seizures. Here it is slightly expanded and, at the end, there is a direct link to interviews with both Dr. Kimford Meador and Attorney Michael Clark on the driving issue with regard to seizures.
Dementia, Driving and Seizures Create Caregiver Stress
by Rita Watson, adapted from Providence Journal
AFTER PASSING love notes to a woman in eldercare, the 88-year-old with Alzheimer’s was sent home for the day. The object of his momentary affection noticed that he was wearing a wedding band and she was upset by his insincerity. It was just as well. Despite his need for socialization, his wife felt that two mornings a week of eldercare was akin to “putting papa away.”
The problems with parenting parents with dementia are similar to parenting adult children with seizure disorders. Decisions about health, safety and freedom often collide.
The National Institutes for Mental Health report that the most common form of dementia, Alzheimer’s, affects an estimated 4.5 million persons in the United States, with early onset of symptoms at about age 65.
The Epilepsy Foundation says 3 million people in the U.S. are affected by seizures. These statistics may increase because soldiers returning from recent wars were exposed to repetitive head injuries; as such, they are at risk for traumatic brain injury and seizures.
With both dementia and epilepsy, caregivers face a challenge. Kimford Meador, MD, a neurologist at Emory University in Atlanta, Georgia, says, “Given HIPPA regulations concerning privacy, caregivers often want more information than we are allowed to give. “With dementia patients, we have to be careful not to be manipulated by their adult children with regard to family finance issues. And with adult children who have epilepsy or seizures, we may face conflicts on the driving issue.”
Driving and living alone are cherished forms of independence. With parents who have dementia, it becomes a tough-love decision for children when it is time to take away the car keys, bring in home companions, or look for safer housing. Sometimes even families who want to care for their parents become victims of burnout and are often exasperated by care demands and answering the same questions over and over again by those whose minds are slipping away.
“Abuse of People with Dementia by Family Carers: Representative Cross-Sectional Survey” was released last month by the Department of Mental Health Sciences at University College, in London. The researchers found that two-thirds of 220 surveyed admitted to abusive behavior in the form of screaming at and insulting those under their care. They concluded “that any policy for safeguarding vulnerable adults must consider strategies directed towards families who provide most care for older people, rather than exclusively concentrating on formal carers.”
Daniel Z. Press, M.D., a neurologist at the Division of Behavioral Neurology at Beth Israel Deaconess Medical Center, in Boston, says, “With Alzheimer’s I always tell children or spouses to separate the person from the disease. When they get angry, they should get angry at the disease that is taking away someone they love. But to continue giving good care, they need a rest to recharge their batteries. Bringing in qualified outside caregivers can help. But sometimes a group eldercare program is a safer alternative.”
When adult children look to family physicians for support with issues that parents perceive as impinging on their freedom, they are often frustrated. Driving is a poignant issue. Physicians may tell children that a parent should no longer drive, but with parents, they hedge, “It’s probably okay to drive if you stay in the neighborhood.” I wonder if they would give this same answer if they lived in the neighborhood with their own young children?
The law is more definitive in most states with regard to driving and seizures than for cognitive impairment.. If you have active seizures you cannot drive. Each state has its own requirements as to how long one has to be seizure free before they can drive. Sometimes parents are in emotional turmoil because they suspect that their children are not reporting all their seizures or are not medication-compliant, but are still driving. There may even be concern that the patient suspends medication when attending parties with alcohol and cocaine.
Parents can inform their child’s physician about the alleged risky behavior, but the physician cannot discuss the adult child’s medical case with them unless the young adult gives permission to share information, which rarely happens.
Dr. Meador says, “This is where we use common sense in balancing privacy and information. The physician can share the information with the adult child and discuss the importance of compliance. If parents fail to alter the adult child’s behavior through discussion , they also have the option to report their children anonymously to the Department of Transportation. Poor medication control can have dramatic consequences. If the young adult loses control of a car while off medication, he or she runs the risk of wrecking the car, losing insurance, and more tragically, injuring themselves or another person, or even facing a manslaughter charge.”
Attorney Michael E. Clark, a partner at Hamel Bowers & Clark LLP, in Houston, is a member of the governing council for the American Bar Association’s health-law unit. He said that in the case of driving, “Even physicians can be held liable if they know that they have a patient with seizures who gets behind the wheel.”
When is it appropriate for a parent to ask an adult child for medical or legal power of attorney? Clark said, “Parents are in a better position than most others to know or suspect that a medical power of attorney is needed – not only to protect their child, but to prevent him or her from harming others.”
Physician Reporting of Patients When Seizures May Affect Driving from Epilepsy.com/ Professionals
Rita Watson: World News Network: Privacy Paranoia: Dementia and Seizures
Copyright 2009 Rita Watson