- PHILADELPHIA (AP) -- Ask
anyone to name a brain disease that causes dementia and eventually death,
and the most likely answer you'll get is Alzheimer's disease.
-
- Though that's one correct answer, it's not the only one.
And a group meeting this week is trying to increase medical and public
awareness for other degenerative brain syndromes that are as misunderstood
and underdiagnosed as they are destructive to victims and families.
-
- Frontotemporal dementia (FTD) is an umbrella term that
includes several related brain disorders. They generally strike people
in their 50s - a decade earlier than Alzheimer's typically hits - and can
take a severe financial, as well as emotional, toll on the sufferers'
families.
-
- Like Alzheimer's, FTD has no cure and no confirmed
treatment
to slow the slide into dementia. While about 4.5 million Americans are
believed to have Alzheimer's, the number with FTD is unclear because it
is often misdiagnosed.
-
- "It's where Alzheimer's was 20 years ago in terms
of the lack of recognition, information, knowledge,"said Helen-Ann
Comstock, chairwoman of the Association for Frontotemporal Dementias.
"This is a disease that hits at the prime of life, making it
financially
devastating for families and baffling and embarrassing because it's not
always recognized."
- "It's tough to say how many people are being
inaccurately
diagnosed but in all likelihood, half of the folks (with FTD) are being
missed," said University of Pennsylvania neurologist Dr. Murray
Grossman,
a member of AFTD's medical advisory council.
"It's so important for us to spread the word, to make sure that we're
getting accurate diagnoses, especially since we're on the cusp of potential
treatments."
- While Alzheimer's is marked by memory loss, FTD patients
retain their memories of people and events. They instead have trouble
speaking
and remembering words, and they may become extroverted or withdrawn, make
inappropriate remarks in public, exhibit rude or childlike behaviour, and
appear selfish or apathetic.
-
- Sometimes compulsive behaviours develop, such as walking
to the same location day after day, constant hand-clapping or rubbing,
or humming the same tune for long periods.
-
- The symptoms often lead to patients being misdiagnosed
with a variety of disorders including Alzheimer's, stroke, bipolar disorder
or depression. As a result, frontotemporal dementia can go undiagnosed
for years.
-
- Ms. Comstock's husband was misdiagnosed twice with
Alzheimer's
before a third opinion months later concluded that he actually had Pick's
disease, a type of frontotemporal dementia.
-
- At the time of his diagnosis in 1978, Craig Comstock
was a 44-year-old math professor at the Naval Postgraduate School in
California,
a researcher and a fixture on the community charity circuit. He died seven
years later, bedridden and unable to eat or drink.
-
- In an unusual move not typical of most medical meetings,
families of FTD sufferers were invited to attend the Philadelphia gathering
and take part in discussions to arm them with information about caring
for their loved ones, Ms. Comstock said.
-
- Dr. Grossman said researchers are looking for ways to
stabilize a protein in the brain that seems to degrade and disappear in
these dementia sufferers.
-
- "We believe frontotemporal dementia is as common
in the under-65 population as Alzheimer's disease is in the above-65
population,"
he said. "What we find is important not just for FTD but for patients
with Alzheimer's disease."
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