64 August 29 • 2019
jn
L
ewy Body Dementia (LBD) is a
complex, challenging brain disorder
that affects many parts of the brain.
Although less known than its “cousins”
Parkinson’
s and Alzheimer’
s, it affects 1.4
million Americans.
Where Alzheimer’
s is the most common
form of dementia, it is followed by LBD
and then Parkinson’
s. Henry Paulson,
M.D., Ph.D., University of Michigan, says:
“Despite the prevalence of Lewy Body
Dementia, confirming it can be challeng-
ing for doctors and patients alike.
”
Dementia is a term for a decline in
mental ability severe enough to interfere
with daily life activity. Most people think
dementia is memory-
related, but it is not always the case.
Dementia can affect balance and move-
ment, decision-making skills, language
skills, visuospatial skills and attention,
without affecting memory.
Susan Barber, Mayo Clinic, points out a
few symptoms of LBD that a person may
experience:
• Cognitive difficulties
• Visual hallucinations
• Tremors and movement disorders
• Fluctuation in day-to-day activities
If an individual has the above symptoms,
her or she should see a neurologist for a
neuropsychological exam.
I experienced several of the above symp-
toms, which led to my LBD diagnosis.
Family members noticed a stiffness in
my gait and occasional tripping. Multi-
tasking abilities diminished, affecting my
driving and problem-solving skills.
Getting an early diagnosis isn’
t easy
because LBD has similar characteristics to
Alzheimer’
s and misdiagnosis is dangerous.
The use of the medication Haldon, used in
the treatment of Alzheimer’
s, has resulted
in the LBD patient becoming comatose.
LBD is a disease of years, not months.
The average age of onset is between 50
and 80. The average duration is between
5-8 years after diagnosis. But, with early
diagnosis and aggressive treatment, it is
possible to extend life expectancy up to 20
years.
Caring for a person with LBD is dif-
ferent than caring for a person with
Alzheimer’
s. With Alzheimer’
s, there
is an expected progression. With LBD,
fluctuating cognition can be frustrating
for the care-giving partner not knowing
“who” they are dealing with. Issues that
are thought to be resolved during a “good
period” may later return.
There are support groups where patient
and care giver can share information and
support one another. For a listing of local
LBD support groups visit alzheimers.med.
umich.edu/lbd/ or contact Renee Gadwa at
(734) 764-5137. ■
Barry Kaufman of West Bloomfield is retired from
Blue Cross Blue Shield. He is an LBD patient,
spokesman and has participated in LBD research
with NIH and the University of Michigan.
which focuses on providing
palliative and supportive care,
as well as hospice resources.
He said the network can assist
families with promoting end-of-
life discussions. Network social
workers can also instruct clients
on the questions they should be
asking their doctors.
“We encourage people to have
discussions while
people are well,
though making
these decisions are
scary and (talking
about) end of life
is off-putting,”
Krakoff said. “You
also have to make
sure you have
these conversations with the
doctors.”
The chaplaincy network puts
families in touch with resources
and can also provide Orthodox,
Conservative and Reform rabbis
who can meet with families and
guide them in life-and-death
medical situations.
“
A lot of decisions (on medical
care) have to do with the
religious affiliation” in terms of
Jewish laws and customs, Krakoff
said. “
A lot of Orthodox Jewish
families would consult with a
rabbi, though one rabbi may not
agree with another rabbi.
“There are many meetings
we have with families” to assist
them with medical decisions,
Krakoff said. “We take end-of-life
decisions seriously, and we take
into consideration quality of life.”
Social worker Rosenfield
said many families contact the
network because they are simply
at a loss about the next steps in
the process for a patient who
may be dying.
“We try to advocate for them,
and we let them know they
are not alone. Our role is to let
them know what their resources
are,” she said. “They have an
advocate with us.” ■
Susan Shapiro’
s book Speaking for the
Dying: Life-and-Death Decisions in
Intensive Care is available through the
University of Chicago Press atpress.
uchicago.edu and on Amazon. To
reach the Jewish Hospital & Chaplaincy
Network, call (248) 592-2687 or, for
more information, visit
jewishhospice.org.
Do You
Know Lewy?
Many are unfamiliar with second
most common form of dementia.
BARRY KAUFMAN SPECIAL TO THE JEWISH NEWS
COURTESY OF BARRY KAUFMAN
Barry Kaufman
Rabbi Joseph
Krakoff
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Thinking Ahead
JACKIE HEADAPOHL ASSOCIATE EDITOR
health
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