Alzheimer’s patients’ ability
to make decisions
about treatment decreases as disease progresses
Newswise — People with very mild
Alzheimer’s disease are still competent to make decisions about
their treatment, while those with moderate Alzheimer’s may no longer
be able to competently make those decisions, according to a study
published in the May 10 issue of Neurology, the scientific
journal of the American Academy of Neurology. The study also found
that people who were aware of their Alzheimer’s diagnosis, symptoms,
and prognosis were more likely to be able to make competent
decisions, regardless of the severity of their disease.
“These results are yet another
reason why people should consult a doctor if they notice any warning
signs of Alzheimer’s in themselves or a loved one,” said study
author Jason Karlawish, MD, of the University of Pennsylvania in
Philadelphia. “An early diagnosis can help assure that patients can
participate in decisions about their care.”
For the study, researchers
interviewed 48 people with very mild to moderate Alzheimer’s disease
and 102 caregivers of people with mild to severe Alzheimer’s. The
patients’ decision-making abilities were measured by giving them
information about the benefits and risks of a hypothetical treatment
for Alzheimer’s and asking them to make a choice whether they would
take the treatment. Then experts assessed whether they were
competent to make the decision.
Of the 48 patients, 19 were found
to be competent in making the decision.
The study found that scores on the
Mini-Mental State Examination (MMSE), a widely used rating scale for
cognitive abilities, can help predict patients’ decision-making
abilities. Those with scores of 11 to 19 on the scale, which
indicates moderate dementia, were not likely to be competent
decision-makers. Those with scores of 24 and higher, which indicates
very mild dementia, were likely to be competent decision-makers.
Those with scores of 20 to 23,
with mild to early moderate Alzheimer’s, are in a gray zone,
Karlawish said. “If there are questions about the competence of a
person in this range, it would make sense to do a detailed
assessment of that person’s decision-making abilities,” he said. “Of
course, the MMSE score is just one piece of information. People
below this range are less likely to retain adequate decision-making
abilities, but some may.”
Another finding of the study was
that people who were aware of their diagnosis, symptoms, and
prognosis were more likely to be able to make competent decisions.
This insight into their condition was not related to the severity of
the disease.
“This finding shows us that the
mere presence of a dementia diagnosis does not preclude the patient
from participating in decisions about his or her own care,” said
neurologist Michael McQuillen, MD, MA, of the University of
Rochester in Rochester, N.Y., who wrote an editorial accompanying
the study.
Karlawish said, “The study also
suggests that the loss of awareness of a patient’s condition may be
a sign that the patient is no longer able to competently make
decisions about their treatment.”
The study also found that 40
percent of the patients could understand how the risks of the
hypothetical treatment would apply to them, while only 15 percent
could appreciate how the treatment’s benefits would apply to them.
Karlawish said the results may be
helpful because, while current Alzheimer’s treatments have few
substantial risks, potential treatments that are under development
may have substantial risks. “Doctors and family members could
benefit from having a method to know if the person is capable of
deciding whether to undergo a risky treatment,” he said.
The study was supported by grants
from the National Institute on Aging, a Paul Beeson Physician
Faculty Scholars in Aging Research award from the John A. Hartford
Foundation, and a Greenwall Faculty Scholar in Bioethics award from
the Greenwall Foundation.
The American Academy of Neurology,
an association of more than 18,000 neurologists and neuroscience
professionals, is dedicated to improving patient care through
education and research. A neurologist is a doctor with specialized
training in diagnosing, treating and managing disorders of the brain
and nervous system such as Parkinson’s disease, dementia, ALS,
narcolepsy, and ataxia.
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