Alzheimer's Tennessee, Inc. – Support, Education and Research for Alzheimer's Disease and Related Dementias
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Lewy Body Dementia

It’s Not Always Alzheimer’s: Understanding Lewy Body Dementia - Webinar

This informative webinar about Lewy Body Dementia with guests, Dr. David Hutchings was recorded in September of 2023. Dr. Hutchings is a neuropathologist specializing in dementia. In addition to diagnosing many patients with Lewy Body Dementia, Dr. Hutchings shares his personal experience dealing with Lewy Body in his own family. He will discuss symptoms that set Lewy Body apart from other types of dementia and explain why it is often misdiagnosed.

Dr. Hutchings was joined by a panel of family caregivers who share their experiences caring for a loved one with Lewy Body Dementia and their struggles to get an accurate diagnosis. 


Lewy Body Disease


In the early 1900s, while researching Parkinson’s disease, Friederich H. Lewy discovered abnormal protein deposits in the brain that disrupt the brain's normal functioning.


These Lewy body proteins are found in an area of the brain stem where they destroy a chemical called dopamine, which causes Parkinsonian symptoms.



Lewy Body Disease is not a rare disease. It affects an estimated 1.3 million individuals and their families in the United States.

Lewy body dementia (LBD) signs and symptoms may include:

  • Visual and auditory hallucinations
  • Stooped posture, tremors, problems with balance, slow or frozen movements, shuffling gait
  • Progressive memory loss
  • Vision impairment such as directional sense, depth perception, object orientation, and illusions
  • Delusions
  • Changes in mood/behavior
  • Limited attention span
  • Falls and sleep disturbances
  • Autonomic dysfunction such as blood pressure and temperature fluctuations, constipation, urinary problems, sexual difficulties
  • Difficulty swallowing
  • Weak voice
  • Difficulty with language and familiar tasks
  • Blank Facial expression
  • Restless leg syndrome
  • Sleep disturbance including REM (Rapid Eye Movement) Sleep Disorder


Early Diagnosis is Important

Since the Lewy bodies themselves can be identified only by autopsy, an accurate diagnosis relies heavily on physician awareness of the characteristics of the disease. A brain scan can detect mental deterioration, but not the actual Lewy bodies.

Once other possible conditions have been ruled out, diagnosis relies on a thorough medical history that focuses on the pattern of symptoms and looks particularly for the hallucinations and sleep disturbances that are common to patients with Lewy Body disease.



The cause of Lewy body dementia isn't known, but the disorder may be related to Alzheimer's or Parkinson's disease.  Lewy bodies contain a protein associated with Parkinson's disease and are often found in the brains of people who have other rare dementias. People who have Lewy bodies in their brains also have the plaques and tangles associated with Alzheimer's disease.  Some scientists have suggested there is a Lewy body variation of Alzheimer's disease. But Lewy body dementia and Alzheimer's simply may coexist in some people.


What’s Next?      

While there is no cure at present for LBD, doctors may prescribe medication to help manage symptoms. Treatments are aimed at controlling the cognitive, motor, and psychiatric problems associated with the disorder.

Medications are especially challenging in dealing with Lewy Body Dementia. A medication that doesn't work for one person may work for someone else.  Some people with LBD may have adverse reactions to certain medications (such as neuroleptics).


How to Help Someone Manage Lewy Body Dementia

  • It is important to take a proactive approach to managing the symptoms of Lewy Body disease.   Small things can make a big difference.
  • Become informed. Learn as much as you can about Lewy Body Dementia and how it is likely to affect your loved one specifically, given his or her health history, age, and lifestyle.
  • Create a routine. It may help people with Lewy Body Dementia to have predictable routines, especially around meal times and sleep times.
  • Establish a nightly ritual. Try to establish bedtime rituals that are calming and away from the noise of television, meal cleanup and active family members. Limit caffeine, discourage napping and encourage exercise.
  • Break tasks into easier steps and focus on success, not failure.
  • Walk together. Taking a walk with the patient with LBD is a win-win activity. Being outdoors and exercising is vital for health and state of mind—for both of you.
  • Strengthen senses. Have a doctor evaluate each of the patient’s five senses in order to identify and treat any abnormalities. Then ask about exercises to improve them.
  • Minimize falls risk: stabilize blood pressure, stay well hydrated, avoid prolonged bed rest, and stand up slowly.


Lewy Body Dementia Caregiver Support Group

2nd Monday at 1pm ET
Facilitators: Monica Krogmann & JoAnn Anderson

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