| April 9, 2002
Do Patients With Alzheimer's Disease
Caregivers' Relationship to Patient Significantly Influences
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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