September 14, 2004

Who Decides if People with Dementia Should Vote?
Expert panel addresses ethical, legal and social issues facing voters with dementia

(Philadelphia, PA) - This November, four million Americans may be deprived of their right to vote or they may become victims of voter fraud. This potential disenfranchisement of basic civil rights cuts across all party lines, income levels, and racial identities. Every citizen with Alzheimer’s Disease or other forms of dementia, regardless of his or her functional level, may be at risk. Who should decide if these vulnerable citizens have the capacity to vote? How should that assessment be made? And how can electoral fraud be prevented?

These and other crucial questions were addressed by a multi-disciplinary, multi-institutional group of eleven experts in law, ethics, government, neurology, geriatrics and psychiatry, co-led by Jason H. Karlawish, MD, assistant professor of medicine at University of Pennsylvania School of Medicine and director of Penn’s Alzheimer’s Disease Center’s Education and Information Core, Paul Appelbaum, MD, Professor and Chair of Psychiatry at the University of Massachusetts Medical School, and Richard Bonnie, JD, Professor of Law at the University of Virginia. Their 18-month study, to be published in the September 15th issue of Journal of the American Medical Association (JAMA), reveals an alarming inconsistency in voting policy regarding citizens with dementia. “We found that judges, family caregivers and long-term care staff do not have adequate guidance to determine whether individuals with dementia have the capacity to vote,” said Karlawish.

By 2050, it is estimated that 15 million Americans will have dementia. Since age is the chief risk factor for the disease and voter turnout is highest in the 65 to 74 age bracket, the needs defined in this landmark study will impact the electoral process for generations to come.

The researchers looked at existing voting laws and discovered an inadequate set of state, federal and local legislation. Only eight states exclude voters on the basis of the specific “capacity to vote” – but none of these states provides a standard to assess an individual’s capacity to vote. As a result, the current laws of most states probably violate the Constitution of the United States, as well as the Americans with Disabilities Act (ADA).

According to the researchers, state laws should be changed to conform to modern constitutional principles, incorporating a test to assess competence to vote, ballots should be simplified to eliminate voter confusion, the public should be educated regarding appropriate assistance for voters with dementia, policies should be formulated for voting in long-term care settings, and further studies are needed to develop more effective voting policies.

Karlawish, whose scholarship focuses on the ethics of research and care of people with dementia, stressed the importance of objectivity, simplicity and clarity in assessing capacity to vote. “We recommend focusing on whether a person can understand the nature and effect of voting and can make a choice. For example, ask the person with dementia how people will choose the next president and when the voting is over how will it be decided who is the winner,” he explained. “If they understand these concepts and they want to vote and can make a choice, that is all that is necessary. They do not need to comprehend the details of each candidate’s platform.”

Other researchers participating in the study included: Thomas Lawrence, MD, the University of Pennsylvania School of Medicine; Christopher Patusky, JD, Fels Institute of Government of the University of Pennsylvania; Constantine Lyketsos, MD, Johns Hopkins University; Rosalie Kane, PhD, University of Minnesota; David Knopman, MD, the Mayo Clinic; Pamela Karlan, JD, Stanford University Law School; Kenneth Schaffner, PhD, George Washington University; David Drachman, MD, University of Massachusetts Medical School; and Charlie Sabatino, JD, the American Bar Association. The Group’s website is at www.uphs.upenn.edu/adc. This project was supported by a grant from the Greenwall Foundation and the Virginia Brown Fellowship for Aging and Stroke Research.

Note: Select members of the Dementia Voting Panel (Doctors Appelbaum and Karlawish, Mr.’s Bonnie and Sabatino, and Ms Karlan) will be available for a telephone press conference on Tuesday, September 14th at 1:00 p.m. EST. This is an opportunity for members of the media to take advantage of the group’s multi-disciplinary perspective on the issues. To join the conference, call 1-888-422-7105 and then enter pin #518620.

For PDF of article contact: JAMA Media Relations at 312-464-5262

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This release is available online at http://www.uphs.upenn.edu/news/News_Releases/sep04/voterswdementia.htm