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Dementia and the Voter; Research Raises Ethical, Constitutional Questions

By Shankar Vedantam

Reprinted with permission from Washingtonpost.Newsweek Interactive and The Washington Post.

Florida neurologist Marc Swerdloff was taken aback when one of his patients with advanced dementia voted in the 2000 presidential election. The man thought it was 1942 and Franklin D. Roosevelt was president. The patient's wife revealed that she had escorted her husband into the booth.

"I said 'Did he pick?' and she said 'No, I picked for him,' " Swerdloff said. "I felt bad. She essentially voted twice" in the Florida election, which gave George W. Bush a 537-vote victory and the White House.

As swing states with large elderly populations such as Florida gear up for another presidential election, a sleeper issue has been gaining attention on medical, legal and political radar screens: Many people with advanced dementia appear to be voting in elections -- including through absentee ballot. Although there are no national statistics, two studies in Pennsylvania and Rhode Island found that patients at dementia clinics turned out in higher numbers than the general population.

About 4.5 million Americans have Alzheimer's disease, the most common cause of dementia. Florida alone has 455,000 patients, advocates estimate.

Concern is growing that people with dementia may be targets for partisan exploitation in nursing homes and other facilities. Even without abuse, family members and caregivers may unduly influence close elections.

"Precisely because Alzheimer's disease insidiously erodes the ability to make reasoned judgments . . . it is somewhat unnerving to consider that patients with dementia may routinely contribute to selecting the leader of the free world," Victor W. Henderson and David A. Drachman wrote after the 2000 election in the journal Neurology.

Many people with mild dementia are able to understand the issues in an election, but experts say there is no way to test voter competence. While many states have laws governing who is eligible to vote, attempts to disenfranchise voters with dementia could face constitutional challenge. Unlike driving, which is a privilege, voting is a right.

"I think it's a very important issue, and I think it is striking how little law there is on the subject," said Erwin Chemerinsky, a political scientist and constitutional scholar at Duke University. Although the state could deny voting rights to people incapable of understanding what was at stake, he said, "the legal challenges are going to be on how that's defined."

Jennifer Mathis, a Washington lawyer at the Judge David L. Bazelon Center for Mental Health Law, a disability rights group, said: "Our voting system does not require intelligent voting or informed voting. The Supreme Court has said the idea of informed voting is too susceptible to abuse."

Advocates such as Mathis say that disqualifying groups of voters usually leads to discrimination. Paupers, slaves and women were once ruled incompetent to vote -- and recent scrutiny of people with dementia has led to allegations of abuse.

In California, for example, Democrats are suing the Veterans Affairs Medical Center in Menlo Park for preventing activists from talking to residents and homeless veterans. Lawyer Scott Rafferty, a member of presidential candidate John F. Kerry's steering committee, said he was turned away on the grounds that residents have dementia.

Rafferty said that most of the residents were of sound mind -- and that most were Democrats. He charged the Bush administration with suppressing Democratic turnout. The Department of Veterans Affairs said it was protecting patients and was required by law to keep out partisan activity.

About 45 states have laws that address whether people who are unable to look after their own finances or health are allowed to vote, Chemerinsky said. About 25 states automatically terminate the right to vote if a person is under the care of a guardian, Mathis added, but those laws are often arcane -- and unevenly enforced.

The result could hardly be worse: a pastiche of outmoded laws that are out of touch with current science and are being applied inconsistently and arbitrarily. Many competent people in nursing facilities are being prevented from voting, advocates say, even as caregivers of other patients with severe dementia vote on their behalf.

"I have had caregivers accompany dementia patients into the booth and vote for them," said Jean Merget, a social worker at the North Broward Memory Disorder Center in Pompano Beach, Fla., who said she repeatedly heard of the practice during support group meetings. "This is not uncommon, especially in Florida."

Germaine L. Odenheimer, a neurologist and geriatrician, recalled seeing activists from the League of Women Voters coming through the VA nursing home in Gainesville, Fla., and registering residents to vote. "A large portion of the residents were demented," said Odenheimer, who now works at the University of Oklahoma. She said she asked activists from the nonpartisan group how they judged which patients were mentally competent. "I never had a satisfactory answer," she said.

Many states do not bar people with dementia from voting unless they have been ruled unfit by court order -- a procedure rarely invoked. Some states automatically disenfranchise people who are under the care of a guardian, but such laws may be overly broad and unconstitutional. After the 2000 presidential election, for instance, disability rights advocates in Maine won a ruling that a law disenfranchising mentally ill voters under the care of a guardian was unconstitutional. Lawyer Kristin Aiello said the law also violated the Americans With Disabilities Act and federal civil rights laws barring discrimination.

"The difficulty is in drawing the line of who is entitled to vote and who is not," said Henderson, a professor of neurology at Stanford University. "Someone who is illiterate can vote. Someone who is intoxicated can vote. . . . It's easy to say people with dementia shouldn't vote, but once you look at the complexity of the issue, the solutions aren't easy."

Alzheimer's disease is characterized by memory loss, disorientation and problems with thinking. In advanced stages of dementia, patients can find it impossible to dress themselves, understand questions or even recognize loved ones. Sometimes, experts say, just asking patients if they want to vote can distinguish people who are competent from those who are not -- patients with severe dementia are usually not interested. It is their families and caregivers who understand the importance of the vote.

Without clear guidelines, however, poll workers and nursing home administrators are deciding which patients are competent to vote, but those decisions are not based on science. Widely used dementia tests provide scores indicating the degree of impairment but are not a reliable predictor of voting competence, experts say. Different people with the same scores may understand an election differently. A person's condition can change, so that a ruling of competence in April may not hold true in November.

"You want a cutoff point where you can say clearly there is so much impairment these people can't make a competent choice," said Brian R. Ott, a scientist at Brown University, "but we don't have a way of defining that cut point."

Ott surveyed 100 patients at a Rhode Island dementia clinic after the 2000 presidential election and found that 60 percent had voted. In another survey, Jason H.T. Karlawish and other researchers found that 64 percent of patients attending a dementia clinic in Pennsylvania had voted in the same election. While more severely impaired patients were less likely to vote, many with advanced Alzheimer's did vote. Ott found that 37 percent of patients with moderate dementia and about 18 percent with severe dementia had voted.

Neurologists are divided about how much help a spouse should offer a patient in voting: "Certainly it seems if I give my wife the right to make decisions about my health care -- keep him on life support or not -- you would think voting would be something she could do," said Ronald C. Petersen, director of the Mayo Clinic's Alzheimer's Disease Research Center in Rochester, Minn. At the same time, he said, it is reasonable to ask whether a person who had lost the ability to care for himself should also lose the ability to vote.

The Alzheimer's Association, a nonprofit science and advocacy group, receives calls every election season from families and nursing homes asking whether patients can vote. The answer is yes, said Stephen McConnell, senior vice president for advocacy and public policy at the association.

"Then they say, 'Can I vote for him?' " McConnell said. "We say, 'No, you can't vote for him. You can make decisions about his finances or health care or whether he should participate in research, but you can't vote for him.' " McConnell said a group of experts wrestled with the issue in August 2003 and agreed that patients even partly cognizant of the election should be allowed to vote.

As the baby boomers age, the number of Alzheimer's cases will soar, and experts said it is time for the nation to grapple with the issue -- if only to head off abuse.

Swerdloff said he wondered whether the Florida woman who voted for her demented husband was guilty of fraud. And he worried about activists going into nursing homes, where two-thirds of the residents have Alzheimer's disease.

"If they can go into a nursing home, why not go into an ICU and have a person who is comatose and on a ventilator -- let the caregiver vote," he said. "Then you say if a person is registered to vote, what about the brain-dead person?"

But Adam Butler of the Disability Rights Center in Little Rock said such talk holds people with disabilities to a higher standard than the rest of the population. No tests of mental competence are required to stand for office, and no law prevents "competent" voters from choosing candidates for questionable reasons: "People may vote because they like the way George W. Bush looks or because they like Heinz ketchup."

Copyright 2004, Washingtonpost.Newsweek Interactive and The Washington Post. All Rights Reserved. http://www.washingtonpost.com.

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