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GERIATRIC
CARE
Early Diagnosis:
THE VALUE OF KNOWING
By Margaret J. Barron, Executive Diredtoor fo the Alzheimer’s Association, San Antonio & South Texas Chapter
On a daily basis, I have at least one person say to me that they
wish they had known about the Alzheimer’s Association when their
loved one was battling Alzheimer’s disease or another dementia. It
is disheartening to hear this over and over again because I know for
every single voice I hear, there are probably hundreds more going
through the same thing, thinking they have to face Alzheimer’s
alone.
As the Executive Director of the Alzheimer’s Association San An-
tonio and South Texas Chapter, my role is to make sure families are
introduced to the Alzheimer’s Association and community resources
as soon as possible after diagnosis. However, we are only reaching a
small percentage of those with Alzheimer’s or other dementias be-
cause too many individuals are not receiving a proper diagnosis.
The issue of disclosure of a dementia diagnosis and what is best for
patients and families has been debated around the world over the past
two decades. Literature reviews continue to show that clinicians who
suspect dementia often do not disclose or document a formal diagnosis.
As a result, approximately 50 percent of patients with dementia have
no documentation of diagnosis in their medical records.
A recent study of caregivers’ experience with the diagnostic process
reported that it took two years after the initial physician visit for some • Over 97 percent say that if they had a family member exhibiting
patients to receive a dementia diagnosis. Caregivers also reported a
18 San Antonio Medicine • July 2016
sense of reluctance among doctors to disclose the diagnosis.
Physicians have cited many barriers to diagnosing dementia, in-
cluding doubts about the value of diagnosis given limited treatment
options, concern over risk of misdiagnosis and lack of knowledge of
local dementia support services. However, based on published data,
perceptions that disclosure of dementia diagnosis is not preferred or
causes psychological distress among individuals and family members
should be challenged.
A survey of public perceptions and awareness of Alzheimer’s dis-
ease was conducted by the Harvard School of Public Health and
commissioned by Alzheimer Europe through a grant provided by
Bayer. The survey found that a majority of patients want to know if
they have Alzheimer’s disease:
• Nearly 89 percent of Americans say that if they were exhibiting
confusion and memory loss, they would want to know if the cause
of the symptoms was Alzheimer’s disease.
• Of those aged 60 and over, 95 percent say they would want to
know.
problems with memory loss, they would want them to see a doc-
tor to determine if the cause was Alzheimer’s.