October 3, 2003
New Penn Study Shows Caregivers Refuse
Alzheimer's Medications When Patient's Quality of Life
Threatened
Caregiver Assessment is Key to Clinical Outcomes
for Alzheimer's Patients and to Determining When is
the Time to End Treatment
(Philadelphia, PA) - A caregiver's
assessment of an Alzheimer's patient's quality of life
is the key factor in determining if and why some caregivers
decline to use a treatment that slows progression of
the patient's disease, according to a new study from
researchers at the Institute on Aging at the
University of Pennsylvania School of Medicine.
Their findings - set for publication in the October
3rd edition of the Journal of the American Geriatric
Society - reveal that caregivers are most likely
to decline medications slowing Alzheimer's disease if
the caregiver assesses the patient's overall quality
of life as fair or poor. For example, a husband may
decline treatment of his spouse when she can no longer
remember family members and can only communicate with
them as strangers. When there is risk to the medication,
the number of caregivers who decline treatment rises
substantially.
"Caregivers have always played a vital role in providing
direct care. That is why we call them caregivers. They
also make decisions for patients," said Jason Karlawish,
MD, an Assistant Professor of Medicine in Geriatrics
at Penn's School of Medicine and lead author of the
study. "In fact, by the moderate to severe stages of
the disease, caregivers make most of the treatment decisions,
including when to say 'no' to a particular therapy."
The two-year study evaluated 102 caregivers of patients
with mild to severe stages of Alzheimer's disease. Seventeen
percent of these caregivers did not want their relatives
to take a risk-free medication that could slow the disease,
and half of the caregivers did not want their relatives
to take medication with a risk of side effects (a three
percent risk of gastro-intestinal bleeding.) Patients
were evaluated using interviews that assessed the severity
of their dementia. Quality of life was measured using
both a single question to assess overall quality of
life, and a 13-point scale that measured, among other
things - physical health, energy, mood, memory, and
the ability to do chores, have fun, and interact with
family and friends.
Among the other key study findings were that a caregiver's
characteristics - mental health, financial burden and
race - also drove their decision to decline a treatment
when there was a risk or side-effect to the treatment.
Caregivers suffering from depression - which can be
a result of the stress and burden of caregiving - were
more likely to decline a treatment. Financial burden
and race were also factors more likely to lead to declining
treatment: study participants who ranked themselves
as having "just enough" or "not enough" funds at the
end of the month were more likely to decline treatment,
where prescriptions can cost a few hundred dollars per
month; non-whites were also more likely to decline treatment,
although no data confirmed why this was the case.
"Understandably, we focus on starting treating early.
But we need to think about the other side of treatment
- stopping it. Now that we understand why caregivers
refuse a dementia-slowing treatment, we can better plan
for patient care and develop future treatment guidelines
that incorporates the caregiver's experience," said
Karlawish. "This planning could ultimately help caregivers
and physicians in determining an appropriate time to
end treatment for Alzheimer's disease, based on factors
influencing quality of life. It also shows that managing
the health of the caregiver is an integral part to treating
a patient with Alzheimer's disease. When you have one
person with Alzheimer's disease, you have at least two
people to take care of."
Funding for this study was provided through a Paul
Beeson Physician Faculty Scholars Award and the National
Institute on Aging.
It is estimated that about five million Americans are
currently living with Alzheimer's disease. Another 360,000
new cases are diagnosed each year. The number of Americans
living with Alzheimer's disease is projected to increase
to 16 million over the next 50 years. Annual costs for
direct medical care of a patient with Alzheimer's disease
are estimated at $50,000. Current treatments used to
slow the progression of the disease include Vitamin
E and cholinesterase inhibitors - Aricept, Exelon and,
possibly, Memantine (which is currently under review
by the Food and Drug Administration.) However, each
treatment has limitations: all are minimally effective
for the most severe stages of Alzheimer's disease, and
each has different side effects.
For
a printer friendly version of this release, click
here.
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