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Meet Dr. David Carr,
605 Coeur de Ville Drive
Creve Coeur, MO 63141
www.p,arcprovence.com
MD, CMD, and Medical Director of Pare Provence
ot only is Dr. David Carr a respected physician,
he is also an expert in geriatric dementia and
memory-related problems in senior adults. He
continues to work with the Division of Geriatrics and
Nutritional Science, making great strides in this important
area of medical research. At Pare Provence, Dr. Carr
oversees medical direction and helps make initial cognitive
and medical assessments of Residents. For Dr. Carr,
helping Residents live a better and more fulfilled life is his
primary m1ss1on.
N
Long-term Care
As the population ages, it's a decision more and more St. Louisans are facing
ith the baby boomer generation
teetering on the brink of senior
citizen status-figures from the 2000 census
show the population of Missourians aged 60
and older will top 1.1 million by 2005-an
unprecedented number of people and their
families will soon be faced with decisions
about long-term care.
"Long-term care entails, in most cases, that
the person can no longer stay at home due to a
mental or physical problem," says Pam Clark,
regional manager for Region 7 (St. Louis City
and the counties of St. Louis, Jefferson and St.
Charles) of the Missouri Department of Health
and Senior Services Long-term Care. There
are 220 long-term care facilities in the region,
caring for approximately 20,000 people. All
facilities are licensed by the state and undergo
annual state inspections.
Clark says there are three types oflong-term
care options-Level I and Level 11 residential
care facilities and skilled nursing facilities.
They are defined by the degree of care offered
to residents and the requirements the facility
must meet in order to be licensed.
A Level I residential care facility gives
residents more independence, with minimal
monitoring and assistance from the facility's
staff.
A Level II residential care facility is
appropriate for residents with a higher degree
of mental or physical decline. It offers more
W
24 stlmag.com August 2004
superv151on than a Level I facility, with staff
members keeping closer tabs on residents' diet
and daily activities.
A skilled nursing facility provides constant
nursing care and medical treatment to its
residents, with a registered nurse on call at
all times.
Finding the right care facility can be
daunting, especially since many people do
not have plans in place. "It's not the kind of
thing you read up on in your spare time," says
Richard Cavanagh, executive director of the
local Long Term Care Ombudsman Program,
which offers free and objective information to
people searching for care facilities.
Workers and trained volunteers with the
program maintain a database of available
space in skilled nursing and residential care
facilities and help match people with the
right facility using characteristics such as
type of care, cost and location. Cavanagh says
the program does not explicitly recommend
facilities, but directs people toward state
resources that catalogue problems with abuse
and violations of residents' rights.
Organizatio"ii.s devoted to a specific disease
also provide resources for people grappling
with long-term care decisions. Nancy Litzau,
director of communications and development
for the St. Louis chapter of the Alzheimer's
Association, says the organization works to
educate people about a large range of choices.
"We want to give people more options," Litzau
says. "It's not one size fits all." The Alzheimers
Association also offers classes on different care
options, a 24-hour help line operated by people
who have experience caring for Alzheimer's
patients and an extensive lending library.
"Until possibly the very end, people can
lead a very contented life," Litzau says.
Pare Provence is a new skilled nursing
facility aiming to help its residents fulfill that
goal in a unique way. Opened on May 16 and
home to around 120 residents, Pare Provence
in Creve Coeur specializes in caring for people
with Alzheimer's or dementia. Administrator
Jennifer Gettmen says the care at Pare Provence
centers around an individual's personality
rather than a medical diagnosis. "Normally in
a skilled facility, the focus is on the person's
medical condition. That determines the course
of care," Gettmen says. "We can accommodate
any physical problem, but we are personcentered and holistic."
After an extensive evaluation process that
highlights an individual's remaining strengths
and skills, specialists design a course of care
developed around those assets. "We look at
indicators that show cognitive abilities and
match that up with care," says Gettmen.
Residents live in "households" of 10 people.
Each person has his or her own bedroom and
everyone shares a courtyard, living area and
kitchen. From cooking to gardening, every
activity is designed to trigger old memories in
hopes that residents can create new memories
that will allow them to function meaningfully
for longer periods.
Although care methods at Pare Provence
remain outside the mainstream, Gettmen says
she believes there will be a shift toward a more
personalized approach in other long-term
care facilities because it results in better care.
In most institutional settings, says Gettmen,
personal care is sacrificed in favor of faster and
easier methods, making people dependent on
the facility's staff instead of helping them to
be as self-sufficient as possible.
Although long-term care facilities may
not be for everybody, they do offer care and
support for people who may not be safe living
on their own. "Most people want to stay in
their homes as long as possible," Clark says.
"But it depends on family involvement and
available resources to care for that person."
-Shannon Burke
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! ~ CENTURY AGO, grandma's forgetfulness was accepted as simple
~~dementia-a
natural consequence of growing older. Now, doctors know that 90
I percent of the time, such symptoms often point to Alzheimer's-a disease nowhere
:µear as benign, nor as inevitable, as the dementia it masqueraded as. • Alzheimer's is a
degenerative disorder that attacks the brain in sections, destroying memory, cognition,
reason, personality and the ability to communicate, eventually leaving its victim with
!,
a brain unable to function at even the minimal level required to keep the body alive.
heimer's Association, the
varies from three to 20
years, but in most cases, victims die an average of
eight years after first experiencing symptoms.
About 4.5 million Americans have the disease,
double the number from 25 years ago. In
Missouri, more than 110,000 people are living
with the disease, according to the Alzheimer$
Association of St. Louis.
Since 1906, when German physician Alois
Alzheimer first described the disease that would
bear his name, researchers have been working to
find a cure. These days, many of the most prominent researchers are right here in St. Louis.
"We're really at the epicenter of Alzheimer$
research here," says Burt Bollinger, communications coordinator for the Alzheimer$ Association
of St. Louis. "The Alzheimer's Disease Research
Center at Wash. U. was one of the first places
in the county that was able to get a federal grant
to study the disease, and a lot of the leading
researchers are based here."
The Alzheimer$ Disease Research Center
(ADRC) at Washington University is one of
just 29 research centers across the United States
that are funded and supported by the National
Institute on Aging (NlA). Funding from NlA for
the centers became available in 1984, and the
ADRC earned funding the next year. Each center
must reapply for funding every five years, competing against all the other centers in the country:
Wash. U. has been reapproved each time.
"Wash. U. is one of our best," says Dr. Creighton
Phelps, director of the NIA's Alzheimer$ Disease
Research Centers Program. "They've had wonderful talent in the neurological sciences, and it has a
continuing presence in the national community.
It's just one of the all-around good centers."
T
hough Alzheimer$ is a powerful disease,
doctors are anxious to dispel the myth
that nothing can be done to combat it. "Its
a terrible illness," says Dr. John C. Morris, director of the ADRC, the Memory and Aging Project
and the Center for Aging at Wash. U. "But people
42 stlmag.com August 2004
who have it get a sense of hopelessness, like
theres nothing to be done. Thats not true."
Morris says there are two clear-cut risk factors
for Alzheimer's disease. The first is age. About 3
percent of 65-year-olds have the disease. By 75,
that increases to 15 percent. By 85, the percentage
is anywhere from 30 to 47.
The second risk factor is genetics. A very rare
fonn of Alzheimer$ that affects less than 1 percent
of all patients and claims its victims as early as in
their 30s has been linked to a specific mutated
gene. People who inherit the gene from their parents will contract Alzheimer's. A more common
form of genetic risk is related not to a specific
abnormal gene, but rather a group of genes. In
essence, people who have family members with
the disease have about a 30 percent higher risk of
developing symptoms than they would otherwise.
Age and genetics are the only two known risk
factors, but several things have been linked to an
increased incidence of the disease, including diabetes, depression, high cholesterol, hypertension
and estrogen pills.
A study released in June by scientists at the
Philadelphia College of Osteopathic Medicine and
the University of Manchester Institute of Science and
Technology also found a possible link between two
sexually transmitted diseaser--herpes simplex virus
type 1 and chlamydia-and late-onset Alzheimer$,
the most common form of the disease. Both infections can cause inflammation of the brain, the study
found, which can result in the breakdown of nerve
cells that is a hallmark of Alzheimer's.
Regardless of the cause, the result is a drastic
loss of brain function. In Alzheimer$ patients, that
loss of function leaves a very clear path. Common
to all Alzheimer$ patients is an unusual configuration of proteins called amyloids. Amyloids are
normal proteins, but in Alzheimer$ patients, they
are overproduced and form abnormal clusters,
called amyloid plaques, around brain cells. Also
present in Alzheimer's patients are neurofibrillary
tangles, which are twisted strands of another type
of protein that form inside brain cells.
Though Alzheimer$ can be diagnosed with
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"The Alzheimer's Disease Research Center at Wash. U. was one of the first
places in the county that was able to get a federal grant to study the disease,
and a lot of the leading researchers a.re based here."
great accuracy through physical and mental testing and a medical history, the presence of amyloid
clusters cannot be verified until the patient has
died and an autopsy has been performed on the
brain.
Being able to identify amyloid clusters in living
patients would represent a big step forward, as doctors would be able to treat patients with existing and
new drugs before symptoms have even occurred,
thereby preventing further loss of functionality.
A group at the University of Pittsburgh discovered
a "tracer molecule" that can be injected into an
Alzheimers patient and will attach to deposited
amyloid plaques. Wash. U. is the second site in the
United States to have access to the tracer and is testing
it in two groups of people--Older people who don't
have Alzheimer's but have a higher risk of developing
it and middle-aged children of Alzheimer's patients.
"It could be a way to diagnose the disease
before dementia occurs," Morris says. "Once
dementia starts, the person will never recover
their brain. Drugs will have optimal effects earlier
in the process, before the amyloid process has
destroyed too much of the brain."
T
here is no sure-fire way Lo avoid contracting the disease, but basic precautions such
as controlling blood pressure, weight and
cholesterol, as well as maintaining an agile mind
and body; are thought to reduce the risk
A study by York University in Toronto, for example, found that older people who have been bilingual since childhood scored higher on cognitive
tests and may be less likely to contract Alzheimer's
than those who speak only one language.
Five drugs have been approved by the FDA
for use in treating the symptoms of Alzheimers.
"None are a cure, none are going to reverse
decline, but they will help persons function better
than they would have otherwise," Morris says.
The goal is to find drugs that arrest or prevent
the disease. There are more than 100 drugs being
tested for those capabilities and their safety for
use by humans.
Some of those drugs are being tested in St.
Louis, not only at Wash. U. but also at Saint Louis
University. Dr. George T. Grossberg, director of
Geriatric Psychiatry at Saint Louis University
School of Medicine, who started the first Geriatric
Psychiatry Program in Missouri in 1979, heads a
clinical research team geared toward developing
new drugs for Alzheimer's -both those that break
up plaques and those that act as a vaccine against
the disease.
"I think there's a lot of potential in a vaccine
approach," Grossberg says, though he adds the
real progress won't get under way for another six
to 12 months.
SLU is also studying a surgical approach to
treating the disease, in which doctors insert a
small device into the brain to prompt circulation
and draining of the fluid in the brain and spine, a
process that is faulty in Alzheimer's patients.
Grossberg's team is also looking into the use
of cholesterol-lowering medications to reduce the
risk of contracting Alzheimers and a drug called
Depakote (divalproex sodium) that may prevent the
problem behaviors common in Alzheimer's patients.
But one of SLUs best (and most unusual) tools is
a collection of 1,200 frozen brains, all of which have
been donated by the families of Alzheimer's patients.
The brain bank, which was founded in 1985 by
Grossberg and was the first in the U.S., is used to get
more information on genetics and risk factors.
The idea behind the brain bank is to study the
behavioral problems of Alzheimers patients who are
still alive, then keep the brains of those patients for
further study after death. With the bank, explains
Dr. John E. Morley, director of the Division of
Geriatric Medicine at Saint Louis University School
of Medicine, the research on a particular patient
doesn't have to stop abruptly when they die.
Other methods of gathering information have
been spearheaded by Wash. U.'sADRC. In the late
1970s, Morris, along with Dr. Leonard Berg, who
founded the AD RC in 1985, developed a five-point
scale, called a clinical dementia rating (CDR) ,
which is now used throughout the world to catego-
Get Thee to a Doctor
If there's one thing Dr. John C. Morris, director of the Alzheimer's Disease Research Center at Washington University, wants people to know, it's that short-term memory loss isn't
inevitable. "In fact, memory and thinking ability-at 75, 85, even 95-can be pretty darn
good. If there's some slippage, it could be the beginnings of a dementive illness." Don't
accept memory loss as part of the normal aging process-much more often it's caused
by something. Because early diagnosis is key to slowing the progress of the disease,
anyone who has memory problems should consult a doctor.
44 stlmag.com August 2004
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"We might benefit in ways that we can't anticipate from stem cell research,
but right now I don't think it's applicable to Alzheimer's."
rize Alzheimers patients according to their degree
of cognitive impainnent, from none (CDR O) to
questionable (CDR 0.5) to severe (CDR 3).
"Dr. Morris is highly, highly regarded," Phelps
says. Morris has also taken the lead role ("and
we are very grateful to him for it," says Phelps)
in trying to standardize a way to collect clinical
data from Alzheimers patients all over the country. Morris is in the process of creating a system
under which all the data from all Alzheimers
patients will be transmitted to a central system
in Seattle. (For the sake of privacy, no names or
other identifying characteristics will be attached
to the data.) "This creates a pool of data for
research that we would not otherwise have,
where we know all the data is collected the same
way," Phelps says. The project is nearly complete,
and Phelps hopes to implement it later this year.
W
h:ile both SLU and Wash. U. are deeply involved in all types of Alz heimer$
rl!Search , Lheres on area neilher
program is pinning its hopes on: stem cell research.
Stem cells--which are gathered from embryos
created for the purpose of in vitro fertilization
but never implanted in a womb and would otherwise be discarded-are malleable and can form
a number of different types of cells. The hope is
that they could be used to replace cells damaged
by diseases such as Alzheimers, Parkinsons and
diabetes and spinal cord injuries.
In 2001, President George W Bush outlawed
the use of federal funds for any new stem cell
research. Recent pleas from the family of Ronald
Reagan, who disclosed his Alzheimer's diagnosis
in 1994 and died June S of complications from
the disease, have failed to change his position.
But some scientists claim other methodssuch as spotting Alzheimer's early and developing
preventative measures to combat its effects--
may yield results sooner than the controversial
procedure. Because Alzheimer's affects many areas
of the brain, researchers say it would be more
difficult to use stem cells to repair damage t11an in
the case of a disease such as Parkinson's, in which
the brain damage is localized.
"We might benefit in ways that we can't anticipate from stem cell research, but right now I don't
think it's apphcable to Alzheimer's," Morris says.
Though Reagan's death hasn't changed President
Bushs mind about stem cell research, it has h a
an impact in another way. In June, lawmakers
introduced identical bills in the House and Senate
that would increase spending on Alzheimer's
research from $680 million to $1.4 billion. The
bills also include an annual tax credit for family
members caring for Alzheimers patients.
That will be good news for anyone who has
a family member with the disease, as well as for
the doctors dedicated not just to finding a cure,
but also to caring for the people who already
have Alzheimers. Physicians such as Morley and
Grossberg see the human side of the disease as well
as the clinical. Both work in nursing homes and
have a hand in finding ways in which to improve
the quahty of life of Alzheimer's patients, including
pet therapy, gardening and other activities. "We
need to focus on caring as well as some of the new
stuff," Morley says. "I think its very important."
lf everything goes according to the hopes and
expectations of Alzheimer's researchers, those measures to improve quality of life will be a mere stopgap until the disease can be eradicated altogether.
"I think we're looking to see major breakthroughs
in humans within five to 10 years," Morley says.
"Theres some very exciting stuff."
Morris agrees: "If we're still having the same
discussion 10 years from now, I'll be very
surprised." •
-With additional reporting by Laura Girresch
Resources for information
on Alzheimer's disease
I
Alzheimer's Association • 800-272-3900, 1www.alz.org
Alzheimer's Association of St. Louis • 9374 Olive,
314-432-3422 or 800-980-9080, www.alzstl.org
National Institute on Aging's Alzheimer's Disease
Education & Referral Center • 800-438-4380, wvyw.alzheimers.org
Department of Health and Human Services' Administration
on Aging Alzheimer's Resource Room • www.aoa.gov/alz
Washington University's Alzheimer's Disease Research Center •
4488 Forest Park Avenue, 314-286-2881, www.alzheimer.wustl.edu/adrc2
46 stlmag.com August 2004