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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“It’
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” said Hitz, 
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”

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” ■
 

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Thinking Ahead

JACKIE HEADAPOHL ASSOCIATE EDITOR

health

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