Safeguards needed to prevent discrimination
of early Alzheimer's patients in the
Policies needed to prepare individuals,
society for earlier diagnosis and high risk
September 19, 2011-- The changing tide of
Alzheimer's diagnosis presents new
challenges to the public, physicians and
lawmakers: if you could find out your
Alzheimer's risk, would you want to know?
How should doctors tell you your risk? And
what does it mean for the many newly
diagnosed Americans still in the workplace?
Despite the emergence of new tools that can
diagnose Alzheimer's earlier, no effective
interventions have been identified to stop
the progression of the disease. A new report
from the Perelman School of Medicine at the
University of Pennsylvania tackles the
ethical and logistical challenges of safely
and effectively communicating a diagnosis of
pre-clinical Alzheimer's disease in light of
the gulf between diagnosis and treatment.
The study appears in the October 11 print
edition of Neurology.
Alzheimer's disease is among the most feared
diseases of aging. The disease has been
known for its role in memory loss and other
clinical symptoms. But increasingly,
patients learn they have the disease before
symptoms start impacting their ability to
function in daily life.
"We need to develop systems now, to navigate
the challenges of a pre-clinical Alzheimer's
diagnosis," said Jason Karlawish, MD,
Professor of Medicine and Medical Ethics,
author of the paper and leading voice on the
ethics of Alzheimer's.
"It's only a matter of time before we are
able identify Alzheimer's before the patient
is ill, like we've done with cholesterol and
heart disease. Given the unique nature of
this disease, which strips people of their
independence as the disease progresses,
safeguards are needed to protect those at
high risk or with a pre-clinical diagnosis."
On the individual level, people strongly
differ in their desire to know their risk
and will react differently to a high
Alzheimer's risk score or diagnosis in the
early stages of the disease. In some cases,
biomarker test results can be harmful;
patients may develop anxiety or serious
depression. To safely and effectively
communicate a diagnosis of pre-clinical
Alzheimer's disease, Dr. Karlawish
recommends that researchers and clinicians
track the emotional and physical impact of a
pre-clinical diagnosis, then develop and
disseminate best practices.
When an effective Alzheimer's therapy or
intervention is found, a process will be
necessary to ensure the patients who stand
to benefit most are prioritized accordingly.
Both prognostic and predictive evidence
should be gauged against not only an
individual's risk but the entire population
at risk, especially if failure to intervene
could cause large numbers of people to be
impacted by any disease progression. A
"National Alzheimer's Education Program" is
proposed, to address how to translate
research results into clinical practice for
those with pre-clinical disease.
"The Alzheimer's disease label does not
equate to disability," said Dr. Karlawish.
In order to ensure that patients' daily
lives (i.e. driving, financial planning,
work status) aren't negatively or
prematurely limited, laws and policies need
to be revised to prevent stigma,
discrimination and, when patients do suffer
"The discovery of pre-clinical Alzheimer's
disease may be how we prevent the tsunami of
Alzheimer's disease dementia, but we must
not drown in the challenges created by our
own discovery," warned Dr. Karlawish.
The study was sponsored by the Marian S.
Ware Alzheimer Program and a Robert Wood
Johnson Investigator Award in Health Policy
Penn Medicine is one of the world's leading
academic medical centers, dedicated to the
related missions of medical education,
biomedical research, and excellence in
patient care. Penn Medicine consists of the
Raymond and Ruth Perelman School of Medicine
at the University of Pennsylvania (founded
in 1765 as the nation's first medical
school) and the University of Pennsylvania
Health System, which together form a $4
Penn's Perelman School of Medicine is
currently ranked #2 in U.S. News & World
Report's survey of research-oriented medical
schools and among the top 10 schools for
primary care. The School is consistently
among the nation's top recipients of funding
from the National Institutes of Health, with
$507.6 million awarded in the 2010 fiscal
The University of Pennsylvania Health
System's patient care facilities include:
The Hospital of the University of
Pennsylvania -- recognized as one of the
nation's top 10 hospitals by U.S. News &
World Report; Penn Presbyterian Medical
Center; and Pennsylvania Hospital – the
nation's first hospital, founded in 1751.
Penn Medicine also includes additional
patient care facilities and services
throughout the Philadelphia region.
Penn Medicine is committed to improving
lives and health through a variety of
community-based programs and activities. In
fiscal year 2010, Penn Medicine provided
$788 million to benefit our community.