When
a young person develops dementia, physicians have a difficult task of
determining the underlying cause. If a familial disease exits, it is easier to
look at a biomarker of that particular disease, but in many cases, there is no
family history and the long, painstaking process of elimination begins.
When
Jim developed dementia, our process to diagnosis was a complicated path with
many twists and turns. One of the early tests was an MRI (magnetic resonance imaging) which oddly enough was determined to
be “normal.”
A
year later, after an abnormal SPECT (single-photon emission computed tomography)
scan, the neurologist ordered a second MRI. Unlike the MRI a year sooner, this
one came back with a transcript that listed several abnormalities. It doesn’t
seem to me that Jim’s brain would change that much in a year, so I often
wondered if clues were missed in the first MRI. Perhaps they were looking for a
brain tumor and didn’t see one, or could the person who read it not notice that
he was looking at the brain of a forty-nine year old man?
Regardless
of the issue, I was disappointed that the initial MRI didn’t show the changes
in Jim’s brain a year sooner. It delayed our finding out that his forgetfulness
and loss of skills was a brain disease and not some kind of mental issue.
An
MRI is a valuable diagnostic tool when the information is carefully interpreted.
A new study at Perelman School of Medicine at the University of Pennsylvania has
shown a seventy-five percent accuracy differentiating between Alzheimer’s and
FTLD (frontotemporal lobar degeneration). FTLD often affect younger people and
is the most common form of dementia for people under age sixty-five.
Some
of the methods previously used to accurately determine the difference between
early onset Alzheimer’s and other types of dementia were more invasive—for example,
a lumbar puncture. Often, the real cause was not known until autopsy, as in Jim’s
case. After ten years of numerous tests, treatments, and five years in a
nursing home, we finally learned that Jim’s Alzheimer’s type of dementia was
specifically corticobasal degeneration. It was a disease I had never heard of
and had not once been offered as the diagnosis.
I
know the agony and frustration a family goes through while trying to uncover
the underlying cause of a loved one’s dementia. Maybe in the big picture, it
doesn’t always make a lot of difference in the treatment. It can make a
difference in whether the side effects of some of the medication is worth the
benefits especially if the drug therapy targets Alzheimer’s plaques, but no
plaques exist with the disease your loved one has.
Also,
you wonder at what point the tests become more expensive than they are worth.
If an MRI can screen for Alzheimer’s and FTLD, a more expensive PET (positive
emission tomography) or invasive lumbar puncture may not be necessary. Medication
that helps with the symptoms of Alzheimer’s could be targeted to those that it
helps rather than given to everyone with dementia symptoms.
The
researchers who conducted this study used other methods to confirm the MRI
results. Since the MRI could differentiate in seventy-five percent of the
cases, only the remaining twenty-five percent who could not be determined would
need further testing.
This
is progress using a test that has been around since the early 1980s. The
results of this new study increases the possibility that MRIs can be used to
measure disease progression in clinical trials or to determine the
effectiveness of drug therapies.
Personally,
I’m for anything that helps families learn what type of dementia their loved
one has and for diagnostic tools that can streamline clinical trials.
Copyright
© December 2012 by L.S. Fisher
Earlyonset.blogspot.com
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