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April 9, 2002

Do Patients With Alzheimer's Disease Vote?

Caregivers' Relationship to Patient Significantly Influences Voting Behavior

(Philadelphia, PA) -- In November of 2000, Americans and the rest of the world waited 35 days for the next President of the United States to be determined. The country was consumed by discussions of double-punched ballots, hanging chads, and other ballot irregularities, but little attention was given to the voters who cast those ballots. For example, do patients with dementia vote?

To explore this question, Jason Karlawish, MD, a physician at the University of Pennsylvania School of Medicine, led a team that surveyed 75 primary caregivers of Alzheimer's patients to determine the patients' voting behavior in the recent 2000 U.S. presidential election. Based on caregivers' responses, the researchers found that 48 of these patients with mild to moderate dementia voted. 79% of these patients voted independently at a designated voting booth, 24% were helped to vote by the caregiver, and one vote was cast by the caregiver on behalf of the patient. The investigators also found that 76% of caregivers believed that caregivers should not complete ballots for patients unable to make voting decisions, and 24% felt a close family member should complete the ballot in that situation. The findings are published in the April issue of Neurology.

In the next several decades, as the incidence of dementia increases in proportion to the aging population, controversy will continue to grow over a caregiver's role in assisting a dementia patient to vote.

"Our society observes the 'one person, one vote' concept, and also that a person who cannot vote should not vote. But our study shows that a portion of the dementia caregiving community does not share these values," explained Karlawish, who also serves as an attending physician in Penn's Alzheimer's Disease Center. "Instead, these caregivers believe that their intimacy and history with the person justifies voting for their loved one with dementia. Does this represent a legitimate extension of a caregiver's responsibilities? That's a question for debate."

As part of that public discussion, Karlawish believes it will be important to determine how and when a caregiver decides what activities a patient can and cannot perform, and how well those decisions correspond to measures of competency. According to the researchers, public discussion should also address the issue of physicians' roles in such decisions, especially decisions that are not limited to matters of patient or public health.

Karlawish and his team also found that voting behavior was strongly influenced by the relationship of the caregiver to the patient -- in that those cared for by spouses were more likely to vote than those cared for by adult children. As Karlawish explains, a patient's relationship with a spouse is more longstanding and intimate than with an adult child, thus enabling a spouse to be more familiar with a patient's preference and wishes. Further, spousal caregivers are more likely to have fewer commitments to other people and jobs -- which means they have more time to devote to the needs and desires of the patient. "Even after adjusting for disease severity, patients cared for by spouses are more likely to vote than patients cared for by adult children," adds Karlawish.

"Nothing in our study should be interpreted to mean that patients with dementia should or should not vote," emphasizes Karlawish. Rather, the findings suggest that further research should be undertaken to better understand how persons with dementia and their caregivers decide what activities the person can and cannot continue and how well those decisions correspond to measures of competency.

This study was funded by grants from the National Institutes of Health (NIH), a Brookdale National Fellowship, and a Paul Beeson Fellowship.


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