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What is Dementia with Lewy Bodies?


Caregivers who look after loved ones with Lewy body dementia face challenges such as assembling the right care team and researching and investing in the best dementia products as the disease progresses. According to the Lewy Body Dementia Association, the condition affects an estimated 1.3 million people in the United States.

According to the Alzheimer's Association, Lewy body dementia is the third most prevalent form of dementia after Alzheimer's and vascular dementia. It accounts for roughly 10 to 25 percent of dementia cases.

What is dementia with Lewy bodies?
Lewy bodies are protein deposits found in the brain that disrupt neurological functions. They were named after the scientist who discovered them in the early 1990s, Friederich H. Lewy, and are mainly made up of alpha-synuclein protein. Lewy bodies have also been found in other brain disorders, including Parkinson's disease dementia and Alzheimer's, according to the Alzheimer's Association.

The Alzheimer's Foundation of America noted that Lewy bodies deplete dopamine, a neurotransmitter responsible for communication between nerve cells. In cases of Lewy body dementia, the protein deposits are also found in other areas of the brain, such as the cerebral cortex, which helps control behavior and thinking abilities.

The National Institute of Neurological Disorders and Stroke stated that scientists do not know why alpha-synuclein proteins accumulate into Lewy bodies and how it develops into Lewy body dementia. However, there is ongoing research to assess these abnormal deposits.

What are the symptoms?
Diagnosing Lewy body dementia can be difficult because it shares many symptoms with other disorders, including Parkinson's and Alzheimer's. The NINDS stated that it is unclear if it is because Lewy bodies play a prominent role in each disease or if it is possible for people to have Lewy body dementia and another condition at the same time. The symptoms of Lewy body dementia include:

  • Decreased cognitive function: Caregivers may notice that their loved ones change in their ability to focus and be alert. They might also have some memory loss, but not on a level that would be associated with Alzheimer's.
  • Parkinsonian motor symptoms: People with Lewy body dementia will also experience the hallmark motor symptoms associated with Parkinson's disease. This includes slowness of movement, balance problems, rigidity and muscle stiffness.
  • Neuropsychiatric symptoms: Individuals with Lewy body dementia may have visual hallucinations or delusions. Behavioral problems may also arise.

The Alzheimer's Association noted that depression is another symptom that Lewy body dementia shares with Parkinson's and Alzheimer's. Therefore, caregivers should develop and maintain strong relationships with the people they care for.

Those with Lewy body dementia experience the disease differently. There are many symptoms, and some individuals may have more trouble with one than others. Therefore, it is essential for caregivers to work closely with their loved ones to figure out what types of dementia products would best suit their needs and when to seek out health care specialists for additional help.

How is Lewy body dementia diagnosed?
The LBDA stated that Lewy body dementia is widely underdiagnosed. This is because of the complexity of the condition. Those who experience more problems with cognitive functions may be misdiagnosed with Alzheimer's, while others who have more trouble with mobility may be misdiagnosed with Parkinson's. A third and small group of individuals may experience neuropsychiatric symptoms, such as hallucinations and behavioral problems.

Though those with Lewy body dementia will eventually develop all of the hallmark symptoms, proper diagnosis likely hinges on when all of them appear. However, early and accurate diagnosis of Lewy body dementia is essential, especially if people are misdiagnosed with Alzheimer's or Parkinson's, because those with Lewy body dementia may react differently to medications than Alzheimer's and Parkinson's patients.

Caring for someone with Lewy body dementia
The LBDA stated that Lewy body dementia has inherent challenges because the disease affects cognitive and motor abilities and can lead to behavioral changes.

Because of this, caregivers should consult with their loved ones' primary care physicians regularly to figure out when and how to expand care plans. As the disease progresses, caregivers can expect to add more specialists to the care team in order to help their family members live as independently and productively as possible.

Though there is currently no cure for Lewy body dementia, there are medications available to treat the different symptoms.

As with any progressive disease, caregivers face the danger of burnout. Therefore, seeking out support groups where there are other Lewy body dementia caregivers can give them much-needed support and advice. In addition, family members with the condition can meet others who are going through the same experiences and can share stories.