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What is Lewy Body Dementia?

It is helpful to begin by answering the question, what are Lewy bodies? Named after the scientist who discovered them, Lewy bodies are tiny abnormal protein deposits (also known as alpha-synuclein) found in the brain.

Lewy Body Dementia (LBD) is caused when Lewy bodies build up in the brain’s nerve cells. Eventually, Lewy bodies overtake the cells and cause them to die. They are so small they can only be seen with a microscope and can affect any part of the brain. According to The Lewy Body Dementia Association, these Lewy bodies affect individual’s behavior, sleep, body movements, and the ability to reason and make decisions. 

Image of a Lewy body in a neuron of the brain.

Unfortunately, LBD is believed to be underdiagnosed. This is due to overlapping symptoms found in Alzheimer’s as well as Parkinson’s Disease. 

Although the symptoms of LBD are similar to these diseases, LBD affects the brain differently. Because of this, getting an accurate diagnosis is important in managing this type of dementia. Some medications used to treat Alzheimer’s and other types of dementia may actually cause dangerous and permanent side effects in people with LBD.

Three Presentations of Lewy body dementia

Lewy body dementia is a term used to describe three related clinical diagnoses:

  • There are some individuals who present with neuropsychiatric symptoms (hallucinations, issues with difficult mental activities, and behavioral problems) which lead to an initial LBD diagnosis.
  • Some people may be initially diagnosed with Parkinson’s disease after experiencing movement disorders. Later they develop dementia and are diagnosed with Parkinson’s disease dementia (PDD).
  • Others will first experience memory and cognition disorders which can be mistaken as Alzheimer’s Disease. Over time these people develop more distinctive features of dementia with Lewy bodies (DLB), resulting in an accurate diagnosis of Lewy body dementia.  

According to The LBDA, “A rather arbitrary time cutoff was established to differentiate between DLB and PDD.  People whose dementia occurs before or within 1 year of Parkinson’s symptoms are diagnosed with DLB.  People who have an existing diagnosis of Parkinson’s for more than a year and later develop dementia are diagnosed with PDD.

Symptoms of Lewy Body Dementia include:

  • Detailed visual hallucinations
  • Individuals may experience depression, anxiety, agitation or other behavioral or mood symptoms
  • Difficulty with movements such as walking, tremors, or stiffness
  • Difficulty sleeping, interruptions to sleep, or vivid dreams
  • Losing the ability to manage body functions such as bladder or bowel control, blood pressure, or body temperature

Because Lewy bodies can affect many different parts of the brain, there are multiple symptoms that can occur. As more and more nerve cells deteriorate, symptoms can increase and become worse.

Treatments

At this time there is not a cure for Lewy body dementia and the course of treatment will vary from person to person. Because each person experiences different symptoms, and each symptom requires a different form of treatment, it is important to seek medical advice from a doctor to determine the best plan of care.

How you can help your loved one 

A woman with her arm around a friend

Learn what you can do to support your loved one.

The Alzheimer’s Society recommends developing tactics which may assist individuals who are experiencing symptoms. Making lists, writing events on the calendar, or setting reminder alarms can be good techniques to use for memory loss. Walks or other active daytime activities may help with sleep disturbances. Seeking professionals such as neurologists, or physical therapists may help with movement symptoms.

It is also recommended to reassure those experiencing hallucinations that you are there to help them and not that what they are experiencing is not real.

Most importantly, remember that those dealing with any form of dementia are not doing these things on purpose. When providing care, caregivers sometimes trigger behaviors without realizing it. By understanding more about the many different types of dementia, caregivers can begin to improve quality and enjoyment of life at whatever stage of dementia a person happens to be in.

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Learn about different types of dementia in our other blog posts!

Understanding Dementia

Understanding Alzheimer’s Disease

What is Vascular Dementia?

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Aspen Senior Care helps seniors with all types of dementia. We provide professional caregivers to assist them in their homes and to give the family caregivers the break they need.

Aspen Senior Day Center in Provo provides adult day care services (fun activities and personal care) for seniors with all types of dementia.

Contact Karen Rodgers, Family Caregiver Coach, for a free assessment to help you navigate the challenges of caregiving. You can reach her at 801-224-5910.