Lewy Body Dementia

What Is Lewy Body Dementia?

Lewy Body dementia is the third most common type of dementia behind Alzheimer’s and vascular dementia. It is estimated that Lewy Body dementia (or DLB – dementia with Lewy Bodies) affects 1.4 million Americans and accounts for 10 percent to 25 percent of all dementia diagnoses. It is frequently misdiagnosed as Alzheimer’s or Parkinson’s disease, but the cognitive symptoms associated with Lewy Body dementia are different: the short-term memory loss is not as common, but complex tasks become difficult, and visuospatial problems develop that make it hard to navigate distances and increase the likelihood of falling.

Lewy Body dementia was named for Dr. Frederick H. Lewy, the neurologist who discovered the abnormal buildup of proteins in the brain that cause the disease in the early 1900’s. The Lewy Body proteins are found in the brainstem and disrupt brain functionality, ultimately disrupting a person’s perception, thinking and behavior.

Symptoms and Diagnosis of Lewy Body Dementia

Lewy Body Dementia, or LBD, is an umbrella term for both dementia with Lewy bodies and Parkinson’s disease dementia. It is one of the most common types of dementia, after Alzheimer's. Dementia with Lewy bodies starts with movement problems. Within a year, thinking and memory problems develop. Parkison's disease dementia also starts with movement problems, however the memory problems don't occur until much later in the disease. 

Dementia with Lewy bodies is a type of progressive dementia that is characterized by abnormal microscopic deposits of a protein fragment called beta-amyloid that slowly damage the brain over time.

Symptoms of Lewy body dementia include: 

  • Movement Disorders/Tremors: Movement disorders similar to the types of movements you would see at the beginning of Parkinson’s disease can be attributed to Lewy Body dementia, including rigid muscles, tremors, shuffling gait and hunched posture. The overlap of symptoms with Parkinson’s is attributed to the fact that both types of dementia have the same underlying abnormalities in how the brain processes the alpha-synuclein protein.
  • Cognitive Problems: Cognitive dysfunction is one of the most common signs of dementia. The cognitive problems specific to Lewy Body dementia include confusion, poor attention span, memory loss and trouble processing visual/spatial information.
  • Sleep Disorders: It’s not uncommon for people living with DLB to physically act out their dreams while they are asleep, sometimes violently. It’s attributed to a Rapid Eye Movement (REM) sleep disorder that is associated with Lewy Body dementia.
  • Malfunctioning of the Autonomic Nervous System: People living with DLB can experience a breakdown in typically automatic functions, such as spikes in blood pressure, body temperature regulation, and bladder and bowel function.
  • Visual Hallucinations: In some cases, Lewy Body Dementia can cause recurrent visual hallucinations that appear in the form of seeing shapes, animals or people that aren’t actually there. Sound, smell and touch hallucinations are also possible, but less common.

With DLB, there is no singular exam that can be administered to will detect the disease. Sometimes, the cognitive symptoms may appear first, and other times, the physical/movement symptoms will appear first, which can lead to an early misdiagnosis of either Alzheimer’s or Parkinson’s.

Lewy Body dementia will typically present itself in the following ways:

  • Dementia symptoms appear first (sleep disorders, visual hallucinations and impaired judgment) 
  • Both dementia symptoms and Parkinson’s symptoms (movement disorders/tremors) appear at the same time 
  • Dementia symptoms appear about a year after Parkinson’s symptoms

There is no cure for Lewy Body dementia, and in many cases the medications for Alzheimer’s and Parkinson’s disease are the same as for DLB. However, for certain people living with DLB, the medications used for Alzheimer’s and Parkinson’s can have an adverse effect on their health. In these cases, the medications can cause worsening of movement-related symptoms and lead to a potentially fatal condition called neuroleptic malignant syndrome (NMS). NMS can cause high fevers, rigid muscles and a breakdown in the body that can lead to kidney failure. If these symptoms occur after beginning a new medication regimen for dementia, contact your physician immediately.

What Are The Risk Factors For Dementia With Lewy Bodies?

Two main factors that have been linked to an increased risk of developing Lewy Body disease:
  1. Gender: Research has shown that men are more prone to develop DLB. 
  2. Age: DLB typically affects people over the age of 60. 

Most recent research has shown that genetics are not a factor, and inheriting the disease from a parent is only found in about 10 percent of all diagnoses.

Support Resources For Caregivers

A diagnosis of Lewy Body dementia can be devastating. Finding the right support and resources may help you start to understand the journey of DLB.

The Lewy Body Dementia Association has a variety of informational publications, videos, essays, and additional resources for caregivers, as well as helpful links to find local support groups in your area.

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