October 2019 is Lewy Body Dementia (LBD) Awareness Month

Dr. Friederich Lewy

Lewy Body Dementia (LBD) Awareness Month is to raise awareness about the most misdiagnosed dementia. According to the National Institute on Aging (NIA), Lewy body dementia (LBD) is the second most common dementia after Alzheimer’s disease (AD). The theme of this year’s LBD Dementia month is “Love is Greater than Lewy.” This is to say that people with LBD will always have someone to lean on whether it is a loving spouse or other family member, a friend, a doctor, nurse or a Lewy Buddy.

Mismatched Socks for Misdiagnosis Awareness

According to the Lewy Body Dementia Association, there are 1.4 million Americans afflicted with Lewy body dementia. However, LBD is the most misdiagnosed form of dementia and to raise awareness of this people are wearing mismatched socks.

Lewy Body Dementia Takes its Name from Dr. Friederich Lewy

Lewy Body takes its name from Dr. Friederich Lewy who was a prominent Jewish American neurologist born in Berlin, Germany. In 1933 he had to flee from the Nazis. Dr. Lewy discovered in 1912 the Lewy bodies that are found in the brains of people suffering from Lewy body dementia and Parkinson’s disease.

Lewy Bodies

In Lewy body dementia, Lewy bodies are clumps of alpha-synuclein protein that develop inside neurons (nerve cells). These Lewy bodies begin to form in the parts of the brain that deal with memory function and movement. This process damages the neurons and they stop functioning and die. This leads to memory loss, dementia and movement, mood and behavior disorders. LBD usually begins around age 50 or older and it tends to affect men slightly more than it affects women.

Risks for Lewy Body Dementia

  • Aging
  • Genetic Risks
  • Parkinson’s disease

LBD is an Incurable Progressive Disease

LBD is a progressive incurable disease. In the early stages people can still function, but as the disease progresses people eventually lose the ability to function. In the late advanced stages they may be totally dependent on others for care.

LBD is the Most Misdiagnosed Dementia

According to the Lewy Body Dementia Association, LBD is the most misdiagnosed dementia. At present, there is no kind of test that can accurately diagnose Lewy body dementia. Lewy bodies can only be seen in post-mortem samples. In some cases LBD gets misdiagnosed as Alzheimer’s disease, schizophrenia, Parkinson’s disease or Parkinson’s disease with dementia. However, in Alzheimer’s the memory loss is more significant in early stages, whereas hallucinations are more pronounced in LBD in early stages. Alpha-synuclein protein is involved in the pathology of both Parkinson’s disease and Lewy body dementia. However, the hallmarks of Alzheimer’s disease are plaques of beta amyloid protein and tangles of tau protein in the brains of people with Alzheimer’s. To read more about Alzheimer’s disease see our blog post from March 6, 2019.

How Lewy Body Dementia Differs from Parkinson’s Disease

Lewy body dementia differs from Parkinson’s disease. In Lewy body dementia the dementia and the motor problems come on early in the disease. In Parkinson’s disease the motor problems come on early and in some cases dementia develops very late if it develops at all. Many people with Parkinson’s disease never develop dementia.

Movement Problems in LBD are Similar to Parkinson’s Disease

Movement problems in LBD are similar to Parkinson’s disease such as:

  • Tremor
  • Stiffness
  • Walking and balance problems
  • Slow movement

Psychiatric Problems in LBD

  • Hallucinations
  • Behavior and personality changes
  • Attention and alertness changes
  • REM sleep disturbances like acting out dreams

Treatment for Symptoms of Lewy Body Dementia

Treating Lewy body dementia is a challenge for doctors, as most anti-psychotic medicines usually make LBD worse, so they must be used with caution.

Treatment for motor movement problems may be some of the same medicines used for treating movement problems in Parkinson’s disease. However, Levodopa can make hallucinations worse, so it must be used in low dosages and with caution.

Prevention may only be by Following a Good Lifestyle

No one has been able to discover how to prevent LBD, but following a good lifestyle may help such as:

  • Managing glucose levels in diabetes
  • Cutting down on drinking alcohol or quitting
  • Getting plenty of physical exercise
  • Getting out to socialize
  • Following a good healthy diet with lots of fresh fruits, vegetables, whole grains and especially fish

Protein in Fish Stopped Formation of Alpha-synuclein in the Brain

A scientific study published April 2, 2018, in Scientific Reports showed that a protein in fish called beta parvalbumin (PV) stops the formation of alpha-synuclein in the brain. Alpha-synuclein is involved in the pathology of both Parkinson’s disease and Lewy body dementia. Salmon, red fish, cod and herring were shown to be particularly good. Other research has shown that fish may prevent or reduce the occurrence of strokes and heart attacks.

Where to Get Help and More Information about Lewy Body Dementia

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center

The National Institute on Aging’s ADEAR Center offers information and free print publications about Alzheimer’s disease and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

1-800-438-4380 (toll-free)

Lewy Body Dementia Association

1-844-311-0587 (toll-free LBD Caregiver Link)

The Michael J. Fox Foundation

The Need for Long-Term Care

Since Lewy body dementia is a progressive disease like Parkinson’s and Alzheimer’s, the need for long-term skilled nursing care may arise. For residents suffering from dementia or other cognitive disorders, the Park Crescent Healthcare and Rehabilitation Center in East Orange, New Jersey offers care regimens and recreational programs designed to enhance cognitive function and promote socialization. For those in advanced stages of dementia, sensory stimulation therapies provide soothing and uplifting stimuli, using light, colors, music, and scent.


If you or your loved one are suffering from dementia, it is very important to get an accurate diagnosis, since there is one kind of dementia that can be reversed with shunt therapy, which is called Idiopathic Normal Pressure Hydrocephalus (iNPH). To read more about iNPH see our blog post from July 18, 2019. Unfortunately, the same cannot be said for Lewy body dementia, Alzheimer’s disease or the kind of dementia that sometimes strikes a person with Parkinson’s disease.



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