Brain disorders often mistaken for Alzheimers

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Brain disorders often mistaken for Alzheimers

By: JOANN LOVIGLIO (Wed, Jul/14/2004)

 

PHILADELPHIA - Ask doctors, medical students and the

general public to name a disease of the brain that

causes dementia and eventually death, and it's likely

nearly all will give the same reply: 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, or 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

suffers' families.

 

" It's where Alzheimer's was 20 years ago in terms of

the lack of recognition, information, knowledge, " said

Helen-Ann Comstock, chair 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. "

 

The Frontotemporal Dementia Satellite Meeting, being

held Thursday and Friday, precedes a larger conference

also in Philadelphia. The 9th International Conference

on Alzheimer's Disease will be held July 17-24.

 

" 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. "

 

The disease causes cells to atrophy in the brain's

frontal lobe, which controls decision-making and

behavior, and the temporal lobe, which controls

emotion and language.

 

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words, and they may become extroverted or withdrawn,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 behavior, and appear selfish or apathetic.

 

Sometimes compulsive behaviors develop, like 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.

 

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 typically seen in esoteric

medical conferences, families of FTD sufferers were

invited to attend the Philadelphia meeting and take

part in discussion groups to arm them with information

abut caring for their loved ones, she said.

 

Grossman said researchers are looking for ways to

stabilize a protein in the brain that seems to degrade

and disappear in frontotemporal dementia sufferers - a

similar process to what happens in Alzheimer's.

 

" We believe frontotemporal dementia as common in the

under-65 population as Alzheimer 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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