Tuesday, September 14, 2004

Dementia and the Voter

A fascinating piece in the Washington Post, as well as in the New York Times and in this week's issue of the Journal of the American Medical Association:

Dementia and the Voter:
Research Raises Ethical, Constitutional Questions

By Shankar Vedantam
Washington Post Staff Writer
Tuesday, September 14, 2004; Page A01

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.

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Here is the abstract of the JAMA article:

Jason H. Karlawish, MD; Richard J. Bonnie, JD; Paul S. Appelbaum, MD; Constantine Lyketsos, MD; Bryan James, MBioethics; David Knopman, MD; Christopher Patusky, JD; Rosalie A. Kane, PhD; Pamela S. Karlan, JD. Addressing the Ethical, Legal, and Social Issues Raised by Voting by Persons With Dementia. Journal of the American Medical Association. 2004; 292:1345-1350.

This article addresses an emerging policy problem in the United States participation in the electoral process by citizens with dementia. At present, health care professionals, family caregivers, and long-term care staff lack adequate guidance to decide whether individuals with dementia should be precluded from or assisted in casting a ballot. Voting by persons with dementia raises a series of important questions about the autonomy of individuals with dementia, the integrity of the electoral process, and the prevention of fraud. Three subsidiary issues warrant special attention: development of a method to assess capacity to vote; identification of appropriate kinds of assistance to enable persons with cognitive impairment to vote; and formulation of uniform and workable policies for voting in long-term care settings. In some instances, extrapolation from existing policies and research permits reasonable recommendations to guide policy and practice. However, in other instances, additional research is necessary.

The New York Times article (Change Urged for Nursing-Home Voters by Denise Grady) talks about the recommendations offered in the JAMA paper:

The recommendations have two purposes, the authors say. The first is to prevent fraud by political groups that would take advantage of patients with dementia by completing their absentee ballots, telling them what to fill in or accompanying them into the voting booth and casting votes for them.

Workers for a party or a candidate who show up at a nursing home to "assist" with voting can accomplish "wholesale fraud," essentially stealing a bloc of votes, said Pamela S. Karlan, a law professor at Stanford University and an author of the journal article. That kind of fraud can have a big impact on small local elections where voter turnout is low, Ms. Karlan said.

"We want to make sure there aren't a pool of people whose names can be used," she said. "It's a sort of identity theft."

The second purpose of the recommendations is to protect the right to vote for people who are in the early stages of dementia but are still competent. If they can answer a few simple questions, no one can bar them from voting just because they have an Alzheimer's diagnosis, and it would then be considered reasonable to give them whatever help they needed to cast their votes.

Testers would ask how people elect a governor or president (by voting) and what determines who wins an election (whoever gets the most votes), the article states. Then the tester would describe two candidates and ask the voter to pick one. It would not matter which one the voter picked; the point is to find out whether the person can make a choice.

Most people with mild dementia could easily pass that test, said Dr. Jason H. Karlawish, the first author of the article and a geriatrician at the University of Pennsylvania's Institute on Aging. Those with severe dementia could not.

"The extremes are easy," Dr. Karlawish said, adding that the test may be most useful for people in the middle, whose mental ability might not be clear to family members or others taking care of them.

The experts said the questions were based on a 2001 decision by a federal district court in Maine in the case of Doe v. Rowe. The court ruled that people have the "capacity to vote" if they understand the nature and effect of voting and can choose among candidates and questions.

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