Vim & Vigor - Summer 2017 - University of Virginia - 55
hurt, but she was shaken. She called
her two sons for a family meeting, and
they all agreed that Buzz needed to be
in a facility well equipped to handle
people with dementia.
Although the last decade has been
challenging for the Browns, finding
Foff has been one bright spot. "She's a
godsend to us as a family," Linda says.
"She's just been amazing."
Foff prescribed medication to help
keep Buzz's anger in check, and she got
him enrolled in a clinical trial testing
the first FTD drug. The investigational
drug, unfortunately, did not show a positive effect on patients. But because Buzz
was part of a research study, he came
to UVA for monthly checkups. On these
visits, Foff would notice little things-
for example, that Buzz wasn't drinking
enough fluids. "I can't emphasize enough
how helpful she was," Linda says.
With Alzheimer's disease, FDAapproved medications can help slow
the disease's progression with modest effect, and many clinical trials are
underway in search of more effective
treatments. This isn't the case with
FTD, but Foff is determined to change
that (see page 54, "What Goes Wrong
in the Brain").
"Even if we don't yet have a cure or
drug that modifies this disease, by coming to our specialized FTD Clinic at
UVA, a family can access a care team
here to help them manage all of the
symptoms that arise, particularly psychiatric ones," Foff says. "We can help
them plan for the future and connect
them with any clinical trials and other
families going through the same thing.
All of this is going to support the family with what is definitely going to be a
It's been devastating for Linda to
see her husband's disease progress, but
she has hope for the future-especially
knowing that her sons are at greater
risk for FTD-because of researchers
like Foff at the forefront of the field. n
Alzheimer's is the most common type
of dementia, but Lewy body dementias
(LBDs) aren't far behind. They affect
approximately 1.4 million Americans
and are the most misdiagnosed forms of
dementia, according to the Lewy Body
With LBD, abnormal protein deposits
(Lewy bodies) build up in the brain, affecting
a person's behavior, cognition and movement.
Unlike Alzheimer's, which typically appears after age 65, LBD commonly strikes in a person's 50s. Oscar-winning actor Robin Williams
was 63 when he died in 2014. His wife, Susan, told ABC's Good Morning
America that an autopsy revealed her husband slowly lost his mind
because of Lewy bodies.
LBD is an umbrella term that has two common presentations: Some
will start out with a movement disorder and later develop dementia,
leading to what is called Parkinson's disease dementia. Others have
what's referred to as dementia with Lewy bodies. They start out with a
cognitive disorder that might be mistaken for Alzheimer's but has two
or more distinctive features: Parkinson's tremors or other symptoms,
fluctuations in attention and alertness, or visual hallucinations, explains
Matthew Barrett, MD, a UVA Health System neurologist who specializes
in Parkinson's and dementias.
Barrett can't emphasize enough how important it is to get an accurate
diagnosis when facing dementia. Those with Lewy bodies, for example,
are more prone to depression and anxiety and even lightheadedness
and drops in blood pressure, all of which are treatable. "We also have
treatments to help with visual hallucinations if they're distressing or
bothersome," Barrett says. "If someone is seeing little fuzzy animals,
there is no reason to treat them. But I've had people flee their home
because they thought something was chasing after them."
No medication yet can halt LBD's progression, but last year UVA
became part of the first international clinical trial (IRB #18890)
investigating a treatment specifically for dementia with Lewy bodies.
Know What the Future Holds
People come from across Virginia and beyond for the expertise and
support of the UVA Memory and Aging Care team. Learn more at
SUMME R 2017