Alzheimer's, Dementia & Mental Health
Dementia Symptoms May Not Be Alzheimer’s; Caregivers
Unmask Lewy Body Dementia
The number two dementia often identified too late for
thousands of seniors - see video by Whoopi
Goldberg in story
Whoopi Goldberg volunteers to make video to
spread the word about Lewy Body Dementia. (see video below)
March 17, 2014 – “You don’t even know the battle is
upon you, until the invasion is well underway,” says Ms. J, a caregiver
for a person with dementia. Ms. J is just one of many caregivers who
learn that debilitating symptoms begin to take their toll on loved ones
before they even discover their diagnosis. It’s Lewy body dementia (LBD),
the second most common form of progressive dementia that affects 1.3
million Americans, primarily seniors.
More than 5 million Americans suffer from
Alzheimer’s disease, the most common form of degenerative dementia. Many
will discover, however, it’s not Alzheimer’s that impairs their
function, according to the Lewy Body Dementia Association.
“Early and accurate diagnosis is critical,” says
Angela Taylor, director of programs, Lewy Body Dementia Association. “In
fact, it may be life-saving.”
Taylor warns, “Unlike Alzheimer’s disease, people
with undiagnosed LBD may be exposed to medications that can be very
harmful to them. Misdiagnosis or lack of diagnosis also delays
comprehensive symptom management that could improve their quality of
LBD is associated with abnormal protein deposits in
the brain, called Lewy bodies, and affects thinking, movement, behavior
and mood. It’s difficult to diagnose LBD, because its early symptoms
resemble symptoms found in Alzheimer’s and Parkinson’s disease.
Lewy body dementia, a complex but surprisingly
common brain disease, refers to two related diagnoses: Parkinson’s
disease dementia (PDD) and dementia with Lewy bodies (DLB). The
difference is in the presentation of two symptoms based on the “one-year
rule.” With DLB, cognitive symptoms that interfere with daily living
appear before or within a year of symptoms resembling Parkinson’s. With
PDD, dementia does not develop until at least a year after movement
New Book with Sketches of LBD Patients
Taylor adds, “We’re helping healthcare
practitioners and LBD families with information and resources. We
collaborated with the National Institutes of Health (NIH) on a new,
comprehensive downloadable booklet, which includes a series of
‘Caregiver Sketches’ that highlight the experiences of others to unveil
the shroud around LBD. It helps people to compare notes, and it
encourages them to seek help… and that’s why we’re here.”
In his mid-sixties, Bruce started having some mild
confusion and vivid dreams that he physically acted out by thrashing
around and even falling out of bed. His neurologist diagnosed REM sleep
behavior disorder and mild cognitive changes. Two years later, Bruce’s
confusion had progressed to dementia. He was no longer able to live
alone in his own home. His neurologist referred him for
neuropsychological testing and, based on the results, changed his
diagnosis to dementia with Lewy bodies.
What’s going on?
Janet, a 60-year old executive secretary, began
having trouble managing the account, paperwork, and other
responsibilities of her job. She became increasingly irritable, and her
daughter insisted she see a doctor. Janet was diagnosed with depression
and stress-related problems. Her doctor prescribed an antidepressant,
but her thinking and concentration problems worsened.
When she could no longer function at work, her
doctor diagnosed Alzheimer’s disease. A few months later, Janet
developed a tremor in her right hand. She was referred to a neurologist,
who finally diagnosed Lewy body dementia.
Trouble with balance
After major surgery at age 69, Cliff developed
balance problems, and later his movements became stiff. Within a year,
Cliff started having hallucinations and troubling side effects from
antipsychotic medications. After an initial diagnosis of parkinsonism,
he soon developed cognitive problems and was diagnosed with Lewy body
Cliff’s balance problems increased, and many falls
prompted physical and occupational therapy, where he learned to use
adaptive devices and techniques. Cliff’s wife, Kathy, discovered that
putting his shoes on before getting him up helped improve his balance.
The doctor prescribed a low dose of medication for parkinsonism, which
Sleep and dementia
Lee started having bad nightmares in his late
sixties. Later, he had problems communicating and would sit for long
periods of time staring out the window. His sleep problems worsened and,
by age 73, were one of the most difficult symptoms of LBD. While asleep,
Lee talked and his limbs jerked—he thought his dreams were real. Upon
waking, he thought he had been at work or out with friends. Medications
prescribed for dementia and sleep issues helped both Lee and his wife
get more rest.
The Lewy Body Dementia Association (LBDA) is dedicated to raising awareness of Lewy body dementias (LBD), supporting people with LBD, their families
and caregivers, and promoting scientific advances. LBD. To learn more
about LBD and LBDA, visit
The Basics of Lewy Body Dementia
LBD is a disease associated with abnormal deposits
of a protein called alpha-synuclein in the brain. These deposits, called
Lewy bodies, affect chemicals in the brain whose changes, in turn, can
lead to problems with thinking, movement, behavior, and mood. LBD is one
of the most common causes of dementia, after Alzheimer’s disease and
Dementia is a severe loss of thinking abilities
that interferes with a person’s capacity to perform daily activities
such as household tasks, personal care, and handling finances. Dementia
has many possible causes, including stroke, tumor, depression, and
vitamin deficiency, as well as disorders such as LBD, Parkinson’s, and
Diagnosing LBD can be challenging for a number of
reasons. Early LBD symptoms are often confused with similar symptoms
found in brain diseases like Alzheimer’s. Also, LBD can occur alone or
along with Alzheimer’s or Parkinson’s disease.
There are two types of LBD—dementia
with Lewy bodies and
Parkinson’s disease dementia. The earliest signs of these
two diseases differ but reflect the same biological changes in the
brain. Over time, people with dementia with Lewy bodies or Parkinson’s
disease dementia may develop similar symptoms.
Who Is Affected by LBD?
LBD affects an estimated 1.3 million individuals in
the United States and accounts for up to 20 percent of people with
dementia worldwide. LBD typically begins at age 50 or older, although
sometimes younger people have it. LBD appears to affect slightly more
men than women.
LBD is a progressive disease, meaning symptoms
start slowly and worsen over time. The disease lasts an average of 5 to
7 years from the time of diagnosis to death, but the time span can range
from 2 to 20 years. How quickly symptoms develop and change varies
greatly from person to person, depending on overall health, age, and
severity of symptoms.
In the early stage of LBD, usually before a
diagnosis is made, symptoms can be mild, and people can function fairly
normally. As the disease advances, people with LBD require more and more
help due to a decline in thinking and movement abilities. In the late
stage of the disease, they may depend entirely on others for assistance
Some LBD symptoms may respond to treatment for a
period of time. Currently, there is no cure for the disease. Research is
improving our understanding of this challenging condition, and advances
in science may one day lead to better diagnosis, improved care, and new
Lewy Body Dementia: Information for Patients, Families, and
By National Institute on Aging
Click here to download the Diagnostic Symptoms Checklist
This checklist is specifically designed to aid in reporting those
symptoms which are involved in diagnosing dementia with Lewy bodies (DLB),
the most undiagnosed form of Lewy body dementia.
Click here to download the Comprehensive LBD Symptoms Checklist
This expanded checklist includes both symptoms required for the
diagnosis of LBD and many other symptoms common in LBD that may appear
as the disease progresses.
Lewy Body Dementia Association
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