Most Alzheimer’s victims not being
told dreaded diagnosis by doctors
5.1 million senior citizens have
Alzheimer’s, two-thirds are women, less likely to be told than cancer
24, 2015 – Wow, what a month in the fight against Alzheimer’s – well
recognized as the affliction senior citizens fear most. It is such a
dreaded diagnosis that only about 45 percent of patients or caregivers
are being told the diagnosis by their doctor, according to the 2015
Alzheimer's Disease Facts and Figures report released today.
No doubt physicians are reluctant
to deliver news of a terrible disease with no hope for effective
treatment. In contrast, more than 90 percent of people with the four
most common cancers (breast, colorectal, lung and prostate) say they
were told the diagnosis.
But, maybe this may change soon
because much of the news this month was more promising about treatments
and maybe even cures for AD. (See report on key
Alzheimer's research released this month.)
"These disturbingly low disclosure
rates in Alzheimer's disease are reminiscent of rates seen for cancer in
the 1950s and 60s, when even mention of the word cancer was taboo," said
Beth Kallmyer, MSW, Vice President of Constituent Services for the
"It is of utmost importance to
respect people's autonomy, empower them to make their own decisions and
acknowledge that people with Alzheimer's have every right to expect
truthful discussions with their physicians. When a diagnosis is
disclosed, they can better understand the changes they are experiencing,
maximize their quality of life, and often play an active role in
planning for the future."
Doctors more likely to give
diagnosis after disease advances
The 2015 Facts and Figures report
also found that people with Alzheimer's or their caregivers were more
likely to say they were told the diagnosis by their doctor after the
disease had become more advanced.
According to Kallmyer, this is a
problem because learning the diagnosis later in the course of the
progressive brain disease may mean the person's capacity to participate
in decision making about care plans, or legal and financial issues, may
be diminished, and their ability to participate in research or fulfill
lifelong plans may be limited.
One of the reasons most commonly
cited by health care providers for not disclosing an Alzheimer's
diagnosis is fear of causing the patient emotional distress. However,
according to the new report, "studies that have explored this issue have
found that few patients become depressed or have other long-term
emotional problems because of the [Alzheimer's] diagnosis."
Benefits of Disclosing an
According to the Alzheimer's
Association, telling the person with Alzheimer's the truth about his or
her diagnosis should be standard practice. Disclosure can be delivered
in a sensitive and supportive manner that avoids unnecessary distress.
"Based on the principles of medical
ethics, there is widespread agreement among health care professionals
that people have the right to know and understand their diagnosis,
including Alzheimer's disease," said William Klunk, M.D., Ph.D., Chair
of the Alzheimer's Association Medical and Scientific Advisory Council.
"The findings from this report
shine a light on the need for more education for medical students and
practicing health care providers on how to effectively make and deliver
an Alzheimer's diagnosis."
Dr. Klunk is a Distinguished
Professor of Psychiatry and Neurology at the University of Pittsburgh
School of Medicine in Pittsburgh, PA, where he also is Co-Director of
the Alzheimer's Disease Research Center.
The benefits of promptly and
clearly explaining a diagnosis of Alzheimer's have been established in
several studies. Benefits include better access to quality medical care
and support services, and the opportunity for people with Alzheimer's to
participate in decisions about their care, including providing informed
consent for current and future treatment plans.
Knowing the diagnosis early enables
the person with Alzheimer's to get the maximum benefit from available
treatments, and may also increase chances of participating in clinical
drug trials that help advance research.
The Alzheimer's Epidemic and Its
The 2015 Facts and Figures report
provides an in-depth look at the prevalence, incidence, mortality and
economic impact of Alzheimer's disease and other dementias - all of
which continue to rise at staggering rates as the American population
"Alzheimer's is a triple threat
unlike any other disease - with soaring prevalence, lack of effective
treatment and enormous costs,” Kallmyer said.
“Promising research is ready for
the pipeline, but there's an urgent need to accelerate federal funding
to find treatment options that effectively prevent and treat
Alzheimer's. Congress must continue its commitment to the fight against
Alzheimer's by increasing funding for Alzheimer's research by $300
million in fiscal year 2016, including increased federal research
funding for better Alzheimer's diagnostic tools to increase the
certainty of diagnosis,"
Prevalence, Incidence and
According to the report, an estimated 5.3 million Americans have
Alzheimer's disease in 2015. This includes an estimated 5.1 million
people age 65 and older, and approximately 200,000 individuals under age
65 who have younger-onset Alzheimer's. Barring the development of
medical breakthroughs, the number will rise to 13.8 million by 2050.
Almost half a million (approx. 473,000) people age 65 or older will
develop Alzheimer's in the U.S. in 2015. Every 67 seconds, someone in
the U.S. develops Alzheimer's. By mid-century, an American will develop
the disease every 33 seconds.
Two-thirds (3.2 million) of Americans over age 65 with Alzheimer's are
Alzheimer's disease is the sixth-leading cause of death in the U.S., and
the fifth-leading cause of death for those age 65 and older. From
2000-2013, the number of Alzheimer's deaths increased 71 percent, while
deaths from other major diseases decreased.
>> Heart disease deaths
decreased 14 percent; stroke deaths, 23 percent; HIV deaths, 52 percent;
prostate cancer deaths, 11 percent; and breast cancer deaths, 2 percent.
Costs and Financial Impact:
Alzheimer's is the costliest disease to society. Total 2015 payments for
caring for those with Alzheimer's and other dementias are estimated at
$226 billion, of which $153 billion is the cost to Medicare and Medicaid
Total payments for health care, long-term care and hospice for people
with Alzheimer's and other dementias are projected to increase to more
than $1 trillion in 2050 (in current dollars).
In 2014, the 15.7 million family and other unpaid caregivers of people
with Alzheimer's disease and other dementias provided an estimated 17.9
billion hours of unpaid care, a contribution to the nation valued at
$217.7 billion (with care valued at $12.17 per hour).
Full text of the Alzheimer's
Association 2015 Alzheimer's Disease Facts and Figures report can be
The report will also appear in the March 2015 issue of Alzheimer's &
Dementia: The Journal of the Alzheimer's Association (volume 11,
issue 3), at
About the Alzheimer's
Association 2015 Alzheimer's Disease Facts and Figures Report
The Alzheimer's Association 2015
Alzheimer's Disease Facts and Figures report is a comprehensive
compilation of national statistics and information on Alzheimer's
disease and related dementias. The report conveys the impact of
Alzheimer's on individuals, families, government and the nation's health
care system. Since its 2007 inaugural release, the report has become the
preeminent source covering the broad spectrum of Alzheimer's issues. The
Facts and Figures report is an official publication of the Alzheimer's
About the Alzheimer's
The Alzheimer's Association is the
world's leading voluntary health organization in Alzheimer's care,
support and research. It is the largest nonprofit funder of Alzheimer's
research. The Association's mission is to eliminate Alzheimer's disease
through the advancement of research; to provide and enhance care and
support for all affected; and to reduce the risk of dementia through the
promotion of brain health. Its vision is a world without Alzheimer's.
or call 800-272-3900.
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