Lewy Body Dementia: The Symptoms and Tips for Coping

Lewy bodies are one of the most common causes of dementia, an umbrella term used to describe the many brain disorders that impact memory, personality, reasoning skills, and motor skills. Lewy Body Dementia is thought to affect more than 1.3 million Americans, most of whom are over the age of 50.

What Are Lewy bodies?

Named for the man who first discovered them, Friedrich Lewy, are small protein deposits that develop on the brain and impair functioning. These deposits build up and typically lead to either Parkinson’s Disease Dementia or Dementia with Lewy Bodies. Lewy bodies can also develop in conjunction with other brain disorders such as Alzheimer’s Disease.

A diagnosis of Lewy Body Dementia can refer to both Parkinson’s Disease Dementia and Dementia with Lewy Bodies, and the symptoms of these two disorders are very similar. The difference is in the order that early-stage symptoms first appear. The order that symptoms begin is also used to distinguish between LBD and other types of dementia.

Some early symptoms of Lewy bodies include:

-Hallucinations and delusions

-Strange dreams and changes in sleep behavior, such as acting out dreams while asleep

-Changes in thinking

-Decline in reasoning skills

-General confusion

-Memory loss

-Changes in motor skills (falling, worsened posture, difficulty with fine motor skills)

Dementia patients who do not have Lewy bodies are unlikely to experience hallucinations or delusions, which makes those symptoms particularly important to note. In Parkinson’s Disease Dementia, physical declines are likely to be seen before dementia symptoms present themselves. In patients who have Dementia with Lewy Bodies, the physical symptoms will most likely present themselves after the dementia symptoms.

Like all forms of dementia, LBD is chronic and progressive. That means that it will persist and worsen over time. According to the Lewy Body Dementia Association, the average prognosis is 5 to 7 years. This is a difficult diagnosis, and it is important for the patient and their family to know that they are not alone.

Here are three tips for coping with Lewy Body Dementia:

  1. Remember that you are not alone. There are over one million LBD patients in the United States alone, and millions more who have received similar diagnoses. There are doctors, therapists, and support groups who are here for you and your family. The Lewy Body Dementia Association is an excellent resource that can help you find a support group in your area. Dementia is tough enough as it is, so whether you were diagnosed or know someone who was, I urge you not to go through this journey alone.
  2. Once you have begun to process your diagnosis, get organized. Although it can be very emotional, try your best to get your affairs in order. This includes your finances, your will, and plans for end of life care. Again, there are specialists here to support you; you don’t need to go through this alone. Therapy is an excellent tool that can help you cope during this process.
  3. Handle your disorder in the way that feels best to you. Some patients prefer to try every treatment option, others prefer not to treat, and others fall somewhere in between. Talk to your doctors, family, and friends to determine how you would like to handle your disorder. You control what you want the remainder of your life look like.


The good news is that treatments for Lewy Body Dementia and similar disorders are continuing to improve. As with all disorders, treatment is most effective when there is an early diagnosis. If you think you might be noticing the early signs of LBD, talk to your doctor, and remember that you are not alone.

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